"The statistics don't matter, until they happen to you."
December 8, 2012 7:53 PM Subscribe
"Premature babies born at the edge of viability force us to debate the most difficult questions in medicine and in life. After just 23 weeks of pregnancy, Kelley Benham found herself in the Neonatal Intensive Care Unit (NICU) with a daughter born so early neonatologist doctors would call her a "micro preemie." New technologies can sometimes keep micro preemies alive, but many end up disabled, some catastrophically so. Whether to provide care to these infants is one of the fundamental controversies in neonatology. This is the story of how Benham and her husband, Tom French, made the difficult choice: Fight for the life of their micro preemie baby or let her go?"
This is the first article in a three part "Special Report" series. The next installments will be published on Tuesday and next Friday. The paper has set up a special section with additional links, resources, an infographic, photos and video.
Additional Reading
Time Magazine / 2011: A 21-Week-Old Baby Survives and Doctors Ask, How Young is Too Young to Save? and Why Delaying Delivery by Just Two Weeks Boosts Baby’s Survival
New York Times / 2012: In Preemies, Better Care Also Means Hard Choice
Preemie Help: Facts and Figures: Preemie Outcomes by Gestational Age
This is the first article in a three part "Special Report" series. The next installments will be published on Tuesday and next Friday. The paper has set up a special section with additional links, resources, an infographic, photos and video.
Additional Reading
Time Magazine / 2011: A 21-Week-Old Baby Survives and Doctors Ask, How Young is Too Young to Save? and Why Delaying Delivery by Just Two Weeks Boosts Baby’s Survival
New York Times / 2012: In Preemies, Better Care Also Means Hard Choice
Preemie Help: Facts and Figures: Preemie Outcomes by Gestational Age
F*ck me. I was a roughly 32 week preemie -- back in the 1970s when that was a much scarier proposition than it is now -- and these stories always just kill me.
What the hell do you do. I remember back in the 1990s when the Netherlands was letting <25-weekers just die. And you can see, from a certain point of view, what they were thinking about. I was a roughly 32-weeker myself and I got off very easy. I've worked with ex-27-weekers and seen how bad the effects can be. I can't imagine what a 23- or 21-weeker looks like at, say, age fifteen.
Sometimes I look at my own healthy, full-term children and know know, that it didn't have to be this way.
posted by PsychoTherapist at 8:34 PM on December 8, 2012 [3 favorites]
What the hell do you do. I remember back in the 1990s when the Netherlands was letting <25-weekers just die. And you can see, from a certain point of view, what they were thinking about. I was a roughly 32-weeker myself and I got off very easy. I've worked with ex-27-weekers and seen how bad the effects can be. I can't imagine what a 23- or 21-weeker looks like at, say, age fifteen.
Sometimes I look at my own healthy, full-term children and know know, that it didn't have to be this way.
posted by PsychoTherapist at 8:34 PM on December 8, 2012 [3 favorites]
Wow. It's amazing that babies born so early can survive and how much progress they've made in increasing survival rates.
I was born 10 weeks early weighing 2lb 9oz in 1979 and back then they didn't really think there was much hope of me or my sister surviving. My parents were told that we would most likely be deaf, blind and mentally impaired if we did. Luckily, the doctors were wrong about all of that, but only in the last year or two did my Mum tell me that they had pretty much given up hope of me surviving after my heart stopped several times and they were basically waiting for a call from the hospital to tell them that I'd passed. The hospital we where we were born had an annual christmas party for premie kids, where we used to get trotted out to meet parents with premie babies to show them that things could turn out ok.
posted by Kris10_b at 8:36 PM on December 8, 2012 [8 favorites]
I was born 10 weeks early weighing 2lb 9oz in 1979 and back then they didn't really think there was much hope of me or my sister surviving. My parents were told that we would most likely be deaf, blind and mentally impaired if we did. Luckily, the doctors were wrong about all of that, but only in the last year or two did my Mum tell me that they had pretty much given up hope of me surviving after my heart stopped several times and they were basically waiting for a call from the hospital to tell them that I'd passed. The hospital we where we were born had an annual christmas party for premie kids, where we used to get trotted out to meet parents with premie babies to show them that things could turn out ok.
posted by Kris10_b at 8:36 PM on December 8, 2012 [8 favorites]
The New Yorker / 2011: A CHILD IN TIME: New frontiers in treating premature babies by Jerome Groopman.
posted by purpleclover at 8:37 PM on December 8, 2012 [1 favorite]
posted by purpleclover at 8:37 PM on December 8, 2012 [1 favorite]
Jesus Christ I don't want to read this. But I will. I hope it won't crush me. It probably will.
I don't know what to type about the 30 seconds of forlorn staring I've been doing at this keyboard...
posted by sanka at 8:48 PM on December 8, 2012
I don't know what to type about the 30 seconds of forlorn staring I've been doing at this keyboard...
posted by sanka at 8:48 PM on December 8, 2012
Huh. This article hit a bit close to home for me.
I was a 25/26 weeker when I was born in the late 1980s. Similar to Kris10_b, there wasn't much hope of me surviving - let alone sans major medical problems (Perhaps I should actually be happy about my crappy handwriting!) - so i'm actually quite pleased that things have advanced as far as they have for many. But above all else, I'm glad that Kelley's baby seems to have survived and thrived. I wish her and her child the best.
posted by pipian at 9:33 PM on December 8, 2012 [2 favorites]
I was a 25/26 weeker when I was born in the late 1980s. Similar to Kris10_b, there wasn't much hope of me surviving - let alone sans major medical problems (Perhaps I should actually be happy about my crappy handwriting!) - so i'm actually quite pleased that things have advanced as far as they have for many. But above all else, I'm glad that Kelley's baby seems to have survived and thrived. I wish her and her child the best.
posted by pipian at 9:33 PM on December 8, 2012 [2 favorites]
NICUs can be extraordinarily profitable for hospitals. Absent regulatory constraint, they will continue to proliferate.
posted by meehawl at 9:41 PM on December 8, 2012 [6 favorites]
posted by meehawl at 9:41 PM on December 8, 2012 [6 favorites]
One of my friends at church recently (shoot, almost a year ago now) had a baby three months early - spent five or six weeks, I think it was, in a hospital bed hoping her daughter would be a little bit more patient. I met Amy on her original due date, which was her first trip outside the house to someplace other than the pediatrician/hospital. She looked just a little bit bigger than a newborn then, and acted almost exactly like one, too. She's just a little bit behind the times for her ought-to-be-this-old age (that is, she performs like a 7 month old, ought to be 8 months old, and is actually 11 months old,) and everyone is extremely, extremely grateful.
What they put even just normal preemies through is dreadful (they test eye pressure with metal instruments.) I don't know how the parents keep it together for the stuff that's necessary for the ones who really struggle. I hope they (the parents) are screened for PTSD.
posted by SMPA at 9:49 PM on December 8, 2012
What they put even just normal preemies through is dreadful (they test eye pressure with metal instruments.) I don't know how the parents keep it together for the stuff that's necessary for the ones who really struggle. I hope they (the parents) are screened for PTSD.
posted by SMPA at 9:49 PM on December 8, 2012
My first grandchild was born yesterday, healthy at almost a nine month gestation, we were fortunate.... I don't think I'm quite ready to read this... I'm just thankful.... peace to all that have/will experience this....
posted by HuronBob at 9:54 PM on December 8, 2012 [11 favorites]
posted by HuronBob at 9:54 PM on December 8, 2012 [11 favorites]
I think I'll come back and read this when I'm not 21 weeks pregnant. Oof.
posted by offalark at 10:08 PM on December 8, 2012 [16 favorites]
posted by offalark at 10:08 PM on December 8, 2012 [16 favorites]
Nothing about it had been natural for me. To get this far had taken four years, $40,000, four in-vitro procedures, an egg donor, lawyers, counselors and contracts. Now my body was trying to spit out the baby we'd made.
I would gently suggest that if your reproductive system appears to not function correctly, perhaps consider adopting? I know we have medical technologies that can allow you to force the issue regardless, but I suspect the use of them greatly increases the odds of a poor outcome for the infant, which seems ethically questionable. Adopting (which you can almost certainly do if you can afford lots of expensive fertility treatments) seems a much safer alternative.
posted by Mitrovarr at 10:09 PM on December 8, 2012 [18 favorites]
I would gently suggest that if your reproductive system appears to not function correctly, perhaps consider adopting? I know we have medical technologies that can allow you to force the issue regardless, but I suspect the use of them greatly increases the odds of a poor outcome for the infant, which seems ethically questionable. Adopting (which you can almost certainly do if you can afford lots of expensive fertility treatments) seems a much safer alternative.
posted by Mitrovarr at 10:09 PM on December 8, 2012 [18 favorites]
Jesus, thanks for ripping my heart out of my chest, Zarq.
Sorry.
This was hard to read. But it was also very familiar. At 18 weeks into her pregnancy, the perinatologist told my wife that her only job from that moment forward was to stay pregnant. That was sobering as hell, and reading that line in this article was like reliving that moment all over again. My wife was hospitalized with premature labor twice -- once at 29 weeks. My kids were born preemie and relatively healthy at 36 weeks.
One of the aspects of pregnancy that I didn't get beforehand was our loss of control. Complications happen, and they can be managed. But when it comes to prematurity and staving off early labor, there are so many unpredictable factors involved and there's very little that you can do other than follow doctors' orders. As a parent you have to put your trust in the hands of the experts and hope for the best. And every pregnancy is different.
I remember looking online during her pregnancy at survival/viability statistics for early births. Big mistake: they were terrifying. I looked for personal stories online from parents of preemies, which were also terrifying. We had friends who had lost children in childbirth, or in the NICU. Their advice and kindness and reassurance was invaluable. But for us, all we had at hand was either clinical advice or lessons from people who had endured the worst case scenario. It wasn't an easy time.
So, I posted this to mefi because I thought people would find it interesting, even if it were hard to read. But also, as someone who has been through something similar (though certainly nowhere near as severe,) it's a story I think others who were in my situation and hers may find helpful to hear. Of course, we don't know if Ms. Benham's child survived yet but I'm still glad to see her story get a wider audience. She articulates the experience so well. Perhaps it will let some parents of preemies know they're not alone.
posted by zarq at 10:12 PM on December 8, 2012 [12 favorites]
Sorry.
This was hard to read. But it was also very familiar. At 18 weeks into her pregnancy, the perinatologist told my wife that her only job from that moment forward was to stay pregnant. That was sobering as hell, and reading that line in this article was like reliving that moment all over again. My wife was hospitalized with premature labor twice -- once at 29 weeks. My kids were born preemie and relatively healthy at 36 weeks.
One of the aspects of pregnancy that I didn't get beforehand was our loss of control. Complications happen, and they can be managed. But when it comes to prematurity and staving off early labor, there are so many unpredictable factors involved and there's very little that you can do other than follow doctors' orders. As a parent you have to put your trust in the hands of the experts and hope for the best. And every pregnancy is different.
I remember looking online during her pregnancy at survival/viability statistics for early births. Big mistake: they were terrifying. I looked for personal stories online from parents of preemies, which were also terrifying. We had friends who had lost children in childbirth, or in the NICU. Their advice and kindness and reassurance was invaluable. But for us, all we had at hand was either clinical advice or lessons from people who had endured the worst case scenario. It wasn't an easy time.
So, I posted this to mefi because I thought people would find it interesting, even if it were hard to read. But also, as someone who has been through something similar (though certainly nowhere near as severe,) it's a story I think others who were in my situation and hers may find helpful to hear. Of course, we don't know if Ms. Benham's child survived yet but I'm still glad to see her story get a wider audience. She articulates the experience so well. Perhaps it will let some parents of preemies know they're not alone.
posted by zarq at 10:12 PM on December 8, 2012 [12 favorites]
I would gently suggest that if your reproductive system appears to not function correctly, perhaps consider adopting? I know we have medical technologies that can allow you to force the issue regardless, but I suspect the use of them greatly increases the odds of a poor outcome for the infant, which seems ethically questionable. Adopting (which you can almost certainly do if you can afford lots of expensive fertility treatments) seems a much safer alternative.
Logically this makes sense, but as someone trying non-traditional means to get pregnant I would like to throw in my hand and say it's just not as simple as that for a lot of people.
Adopting (which you can almost certainly do if you can afford lots of expensive fertility treatments) seems a much safer alternative.
Fertility treatments are covered under many different insurances. My own covers three in-vitros, and all the meds and procedures that come with it.
For the record I have thought of adopting, but shelling out 60k and with years of waiting is not something within my (and many other people's) means at the moment.
Beside that, many people who need a boost in fertility or general help with it do go on to have perfectly healthy babies.
posted by Malice at 10:23 PM on December 8, 2012 [11 favorites]
Logically this makes sense, but as someone trying non-traditional means to get pregnant I would like to throw in my hand and say it's just not as simple as that for a lot of people.
Adopting (which you can almost certainly do if you can afford lots of expensive fertility treatments) seems a much safer alternative.
Fertility treatments are covered under many different insurances. My own covers three in-vitros, and all the meds and procedures that come with it.
For the record I have thought of adopting, but shelling out 60k and with years of waiting is not something within my (and many other people's) means at the moment.
Beside that, many people who need a boost in fertility or general help with it do go on to have perfectly healthy babies.
posted by Malice at 10:23 PM on December 8, 2012 [11 favorites]
Isn't it odd, the extremes we go to to prevent some deaths, and to cause others.
posted by five fresh fish at 10:23 PM on December 8, 2012 [17 favorites]
posted by five fresh fish at 10:23 PM on December 8, 2012 [17 favorites]
I would gently suggest that if your reproductive system appears to not function correctly, perhaps consider adopting? I know we have medical technologies that can allow you to force the issue regardless, but I suspect the use of them greatly increases the odds of a poor outcome for the infant, which seems ethically questionable.
For whatever it's worth, the condition that caused my wife's infertility (PCOD) had nothing to do with the complications she experienced during her pregnancy, nor my kids' premature birth. Difficulties conceiving do not automatically mean that a given reproductive system can't sustain a pregnancy. Nor are they necessarily a good predictor of whether complications will arise.
We don't know what their medical issues were, nor do we know if only one or both of them were infertile, or to what degree.
Something to consider.
posted by zarq at 10:24 PM on December 8, 2012 [7 favorites]
For whatever it's worth, the condition that caused my wife's infertility (PCOD) had nothing to do with the complications she experienced during her pregnancy, nor my kids' premature birth. Difficulties conceiving do not automatically mean that a given reproductive system can't sustain a pregnancy. Nor are they necessarily a good predictor of whether complications will arise.
We don't know what their medical issues were, nor do we know if only one or both of them were infertile, or to what degree.
Something to consider.
posted by zarq at 10:24 PM on December 8, 2012 [7 favorites]
Somewhat less depressing trivia about preemies: At one point in the history of the freakshows at Coney Island, there was a neonatologist who had a display of his preemies there. This was back when survival was far rarer. The doctor used the proceeds to pay for his expensive practice.
posted by gusandrews at 10:27 PM on December 8, 2012 [1 favorite]
posted by gusandrews at 10:27 PM on December 8, 2012 [1 favorite]
I suppose it probably depends on the patient situation and treatment involved whether a given fertility treatment increases the risk of complication and how much, but I wish people would at least consider the issue and take it into account before attempting to use them. I definitely see situations in the news where the risk of complications that affect the health of the infant was obviously not considered, resulting in things like extreme multiple pregnancies, etc.
posted by Mitrovarr at 10:32 PM on December 8, 2012
posted by Mitrovarr at 10:32 PM on December 8, 2012
A dear friend of mine gave birth to her son last Thursday; they made it just shy of 32 weeks, and she'd been in hospital for the last week while they tried to delay labour as long as possible. He's doing well, so I'm ecstatic; and I just wanted to say thank you to those who commented here about their own early births. It's encouraging.
posted by jokeefe at 10:34 PM on December 8, 2012 [3 favorites]
posted by jokeefe at 10:34 PM on December 8, 2012 [3 favorites]
My first grandchild was born yesterday, healthy at almost a nine month gestation, we were fortunate.... I don't think I'm quite ready to read this... I'm just thankful.... peace to all that have/will experience this....
posted by HuronBob
Congratulations on the birth of your grandchild, Grandpa HuronBob. May his/her life be filled with love, laughter and joy.
What a lovely bright spark of happiness in a heartbreakingly sad thread.
posted by malibustacey9999 at 10:38 PM on December 8, 2012 [17 favorites]
posted by HuronBob
Congratulations on the birth of your grandchild, Grandpa HuronBob. May his/her life be filled with love, laughter and joy.
What a lovely bright spark of happiness in a heartbreakingly sad thread.
posted by malibustacey9999 at 10:38 PM on December 8, 2012 [17 favorites]
I get consulted to speak to mothers who are in premature labor or for any other reason have to deliver early. As part of my training, I've watched a few doctors giving this talk, and as in all other things in medicine, they often do this very poorly. They doctors fail to communicate well (or, in shitty but precise corporatespeak, fail to 'manage expectations') and if the patient is anything other than a highly functioning individual, they also fail to demand more information, in the right format, for their own education.
We use this online calculator to give a sense of general numbers, but statistics are meaningless for any one individual, and often what the parents need to hear (even if they don't know it) is how the infant will actually do. Generally, females do better than males, the bigger you are the better you do, if you're a twin you're more likely to do worse, and if mom gets steroids you'll do better.
Sometimes, if it's a reasonably smart person I will delve into the concept of how the first three months after a term baby is born has been dubbed the 'fourth trimester' because of how helpless human babies are. Being born premature is just an extension of that, where babies require help not just with general care, but also their physiology.
At other times, when it's a 16 year old who is completely overwhelmed, I will just go straight to the point about what happens at birth and what happens in the NICU, in the simplest terms possible. When the baby comes out, if he or she is stable, we might let you hold him or her for a while, otherwise we will take her away straight to the NICU. A premature baby will have trouble eating because they just don't know how to suck well, so we will give food through a tube that goes from their nose/mouth to their stomach, or give IV nutrition if even their gut is not working, we may have to help them breath or take over their breathing entirely with a machine that blows air in and out. Their immune system is not very developed, so we might have to give them antibiotics to cover for any possible infections. And most important, we will try to give them a sense of the wide range of possibilities in terms of how the baby will develop. She could be a totally normal kid. She could have some learning difficulties that only show up later down the line when she starts school. She could need basic care like being fed and bathed for the rest of her life, or she may not survive. You'd be surprised how many moms don't ask or don't realize their need to know these answers, and how many doctors fail to tell them.
posted by legospaceman at 11:08 PM on December 8, 2012 [24 favorites]
We use this online calculator to give a sense of general numbers, but statistics are meaningless for any one individual, and often what the parents need to hear (even if they don't know it) is how the infant will actually do. Generally, females do better than males, the bigger you are the better you do, if you're a twin you're more likely to do worse, and if mom gets steroids you'll do better.
Sometimes, if it's a reasonably smart person I will delve into the concept of how the first three months after a term baby is born has been dubbed the 'fourth trimester' because of how helpless human babies are. Being born premature is just an extension of that, where babies require help not just with general care, but also their physiology.
At other times, when it's a 16 year old who is completely overwhelmed, I will just go straight to the point about what happens at birth and what happens in the NICU, in the simplest terms possible. When the baby comes out, if he or she is stable, we might let you hold him or her for a while, otherwise we will take her away straight to the NICU. A premature baby will have trouble eating because they just don't know how to suck well, so we will give food through a tube that goes from their nose/mouth to their stomach, or give IV nutrition if even their gut is not working, we may have to help them breath or take over their breathing entirely with a machine that blows air in and out. Their immune system is not very developed, so we might have to give them antibiotics to cover for any possible infections. And most important, we will try to give them a sense of the wide range of possibilities in terms of how the baby will develop. She could be a totally normal kid. She could have some learning difficulties that only show up later down the line when she starts school. She could need basic care like being fed and bathed for the rest of her life, or she may not survive. You'd be surprised how many moms don't ask or don't realize their need to know these answers, and how many doctors fail to tell them.
posted by legospaceman at 11:08 PM on December 8, 2012 [24 favorites]
I suppose it probably depends on the patient situation and treatment involved whether a given fertility treatment increases the risk of complication and how much, but I wish people would at least consider the issue and take it into account before attempting to use them. I definitely see situations in the news where the risk of complications that affect the health of the infant was obviously not considered, resulting in things like extreme multiple pregnancies, etc.
When you first go for infertility assessment, a reproductive endocrinologist tries to determine through blood, vaginal fluid and semen tests which person in the couple is experiencing difficulty. In some cases, it's both. My wife also had a hypersalpingogram to determine whether there was a physical blockage in her uterus. In our case, there were a couple of issues. One physical. One hormonal. Both treatable. This was good news.
The fertility specialist recommended IUI in conjunction with hormone therapy for my wife. IUI is artificial insemination. Essentially, they take what is essentially a big turkey baster and inject the sperm into the uterus, so it will be closer to the egg and won't have to travel as far. IUI does not require eggs to be removed, fertilized and re-implanted, as is required for IVF. All things considered, it is a pretty low tech solution, and it's a LOT less expensive than IVF. In fact, some of it was covered by our insurance.
However, some studies have shown that it results in a higher possibility of multiples than IVF. We had many meetings and appointments with our RE while we went through the process. That fact was never mentioned. Why? I asked later. Study results conflict. Some studies indicate a higher possibility of multiples with IUI. Others with IVF. We asked what the risk of multiples was, and were merely told it was low. We were told IUI was the most ideal and least difficult solution for us to start with. So we took it. (If it didn't work, IVF was our next option.)
You can confirm this yourself. Search online for "risk of multiples with iui vs. ivf" and see what results you get. Studies and anecdotal stories are all over the map. There's no way to know which is more risky. I suspect this is in part because every case of infertility has different factors.
When my wife did become pregnant through IUI, more than two fetal sacs were present on the ultrasound. But only two fetuses survived to the end of the pregnancy. We had done our homework and asked questions. Didn't help. So there we were.
I mention all of this to point out that the risks aren't necessarily easily predictable for a given patient undergoing a given procedure, even for doctors. Sure, there are some basic precautions that can and should be taken. But it's only in recent years that guidelines and standards have been imposed on the industry for how many eggs should be re-implanted during IVF, for example. I don't know what the ultimate solution is. Personally, I think that once a couple is faced with the possible need to selectively reduce or abort an entire pregnancy, something has obviously gone wrong. But I don't know in what way that possibility can be reduced to zero. And I can tell you, having been there myself, that those decisions are very, very difficult.
posted by zarq at 11:21 PM on December 8, 2012 [4 favorites]
When you first go for infertility assessment, a reproductive endocrinologist tries to determine through blood, vaginal fluid and semen tests which person in the couple is experiencing difficulty. In some cases, it's both. My wife also had a hypersalpingogram to determine whether there was a physical blockage in her uterus. In our case, there were a couple of issues. One physical. One hormonal. Both treatable. This was good news.
The fertility specialist recommended IUI in conjunction with hormone therapy for my wife. IUI is artificial insemination. Essentially, they take what is essentially a big turkey baster and inject the sperm into the uterus, so it will be closer to the egg and won't have to travel as far. IUI does not require eggs to be removed, fertilized and re-implanted, as is required for IVF. All things considered, it is a pretty low tech solution, and it's a LOT less expensive than IVF. In fact, some of it was covered by our insurance.
However, some studies have shown that it results in a higher possibility of multiples than IVF. We had many meetings and appointments with our RE while we went through the process. That fact was never mentioned. Why? I asked later. Study results conflict. Some studies indicate a higher possibility of multiples with IUI. Others with IVF. We asked what the risk of multiples was, and were merely told it was low. We were told IUI was the most ideal and least difficult solution for us to start with. So we took it. (If it didn't work, IVF was our next option.)
You can confirm this yourself. Search online for "risk of multiples with iui vs. ivf" and see what results you get. Studies and anecdotal stories are all over the map. There's no way to know which is more risky. I suspect this is in part because every case of infertility has different factors.
When my wife did become pregnant through IUI, more than two fetal sacs were present on the ultrasound. But only two fetuses survived to the end of the pregnancy. We had done our homework and asked questions. Didn't help. So there we were.
I mention all of this to point out that the risks aren't necessarily easily predictable for a given patient undergoing a given procedure, even for doctors. Sure, there are some basic precautions that can and should be taken. But it's only in recent years that guidelines and standards have been imposed on the industry for how many eggs should be re-implanted during IVF, for example. I don't know what the ultimate solution is. Personally, I think that once a couple is faced with the possible need to selectively reduce or abort an entire pregnancy, something has obviously gone wrong. But I don't know in what way that possibility can be reduced to zero. And I can tell you, having been there myself, that those decisions are very, very difficult.
posted by zarq at 11:21 PM on December 8, 2012 [4 favorites]
Our baby boy was born at 25 weeks in February, so quite a lot of this is very familiar. Even gossiping about the doctors and nurses. We were told beforehand he wouldnt cry (he did), wouldnt move (boy did he move) and that he would be blue when born (he was scarlet red). I think they were preparing us for the worst. Its amazing what they can do in the nicu, and if its profitable for the hospitals that's just gravy from my very biased perspective.
Our son is now over ten months and developmentally on track for his corrected age, with no dramas. But the first 5 months were ventilator machines, oxygen support, eye surgery, medicines, later oxygen tanks etc. Its a tough environment, where things change on a hourly basis.
I look back at the pictures of him in the nicu, with a feeding tube down his throat, monitors stuck to him, IV lines in his hands and feet, bruised and swollen and I cry. Partly recalling my own feelings during that stressful time, but mostly pride at how incredibly strong he is. I've learnt a lot from that little guy, and continue to do so.
posted by Admira at 11:22 PM on December 8, 2012 [11 favorites]
Our son is now over ten months and developmentally on track for his corrected age, with no dramas. But the first 5 months were ventilator machines, oxygen support, eye surgery, medicines, later oxygen tanks etc. Its a tough environment, where things change on a hourly basis.
I look back at the pictures of him in the nicu, with a feeding tube down his throat, monitors stuck to him, IV lines in his hands and feet, bruised and swollen and I cry. Partly recalling my own feelings during that stressful time, but mostly pride at how incredibly strong he is. I've learnt a lot from that little guy, and continue to do so.
posted by Admira at 11:22 PM on December 8, 2012 [11 favorites]
I have very mixed feelings about this. I had a little cousin born last autumn at 27 weeks. His mother insisted on heroic measures, and the poor little pumpkin spent the entire four days of his little life jammed full of needles and tubes, obviously in pain and distress. It pains me to say this, but his death was a mercy. Quality of life matters, and his was never going to be anything but awful.
posted by MissySedai at 11:28 PM on December 8, 2012 [9 favorites]
posted by MissySedai at 11:28 PM on December 8, 2012 [9 favorites]
I was a 31 week preemie in the early 70:s, at 2.2 pounds, 14 inches. Survival at that age was a much less certain prospect then. Then a nurse infected almost the entire ward with salmonella - luckily all the preemies made it, although I take it it was a close thing. I didn't get to go home for about three months.
Despite my parent's fears, and my brother's teasing about hypoxia in the ventilator damaging my brain, I don't have any significant issues. It wasn't until I became an adult that I really realized how incredibly lucky I am. Reading this post drives it home even more - heart-wrenching.
posted by gemmy at 11:32 PM on December 8, 2012 [2 favorites]
Despite my parent's fears, and my brother's teasing about hypoxia in the ventilator damaging my brain, I don't have any significant issues. It wasn't until I became an adult that I really realized how incredibly lucky I am. Reading this post drives it home even more - heart-wrenching.
posted by gemmy at 11:32 PM on December 8, 2012 [2 favorites]
Of course, we don't know if Ms. Benham's child survived yet but I'm still glad to see her story get a wider audience.
Will we know? Are the other parts of this series about her, or others?
posted by corb at 11:33 PM on December 8, 2012
Will we know? Are the other parts of this series about her, or others?
posted by corb at 11:33 PM on December 8, 2012
Will we know? Are the other parts of this series about her, or others?
From the link here:
PART TWO
The zero zone
In a neverland of sick babies, the NICU is a place where there is no future or past. Every moment is a fight for existence.
Online Tuesday, Dec. 11.
PART THREE
Baby's breath
How does one calculate the value of a life?
Online Friday, Dec. 14.
Guess we'll have to wait to find out.
Thanks for this post zarq.
posted by Admira at 12:18 AM on December 9, 2012
From the link here:
PART TWO
The zero zone
In a neverland of sick babies, the NICU is a place where there is no future or past. Every moment is a fight for existence.
Online Tuesday, Dec. 11.
PART THREE
Baby's breath
How does one calculate the value of a life?
Online Friday, Dec. 14.
Guess we'll have to wait to find out.
Thanks for this post zarq.
posted by Admira at 12:18 AM on December 9, 2012
This post reminded me to check up on this recent ask me.
The world is hard to hold in my heart sometimes.
posted by roboton666 at 12:24 AM on December 9, 2012 [2 favorites]
The world is hard to hold in my heart sometimes.
posted by roboton666 at 12:24 AM on December 9, 2012 [2 favorites]
I have very mixed feelings about this. I had a little cousin born last autumn at 27 weeks. His mother insisted on heroic measures, and the poor little pumpkin spent the entire four days of his little life jammed full of needles and tubes, obviously in pain and distress. It pains me to say this, but his death was a mercy. Quality of life matters, and his was never going to be anything but awful.
My wife and I had similar discussions about our son. I'm not going to lie, sometimes he looked like he was incredibly uncomfortable, in pain, distress (especially with the ventilator) and we wondered if we were being selfish, forcing pain and suffering on our son.
Now when I see my son smiling, playing, growing, learning etc of course it seems like the right decision, but that's with the benefit of hindsight. At the time I just thought that, you know, he could have been born blue, not breathing, not crying, not moving, no heartbeat. But he wasn't. He beat those odds, I kinda felt like he was doing his all to stay alive and we should at least give him the best chance we could.
posted by Admira at 12:44 AM on December 9, 2012 [3 favorites]
My wife and I had similar discussions about our son. I'm not going to lie, sometimes he looked like he was incredibly uncomfortable, in pain, distress (especially with the ventilator) and we wondered if we were being selfish, forcing pain and suffering on our son.
Now when I see my son smiling, playing, growing, learning etc of course it seems like the right decision, but that's with the benefit of hindsight. At the time I just thought that, you know, he could have been born blue, not breathing, not crying, not moving, no heartbeat. But he wasn't. He beat those odds, I kinda felt like he was doing his all to stay alive and we should at least give him the best chance we could.
posted by Admira at 12:44 AM on December 9, 2012 [3 favorites]
By the 23rd week, I was taunted by that incessant lullaby on the hospital loudspeaker, a reminder of how natural this process was supposed to be. Nothing about it had been natural for me.
Very true, unfortunately. When it comes to birth culture, there is a brutal separation between the haves and the have-nots ... and the people doing it think they're being kind, positive, feminist.
It's time we shut the fuck up about birth being natural. It is. And so, for both mother and baby, is dying of complications. Far more often than anyone wants to admit.
My best friend lost her baby at nine months recently. People rallied round ... and you know what came out? Lots of them had had the same experience. Losing a baby is not uncommon. But it was only when someone else's baby dies that it becomes acceptable to talk about it. Pregnancy and birth aren't magical lullabies on the loudspeaker: they are violent and dangerous and bad things can happen.
It's time we talked about this. It's bad enough when the dark side of birth happens to you; we have to stop adding this pretence that makes the people it happens to feel like shameful aberrations.
posted by Kit W at 1:30 AM on December 9, 2012 [26 favorites]
Very true, unfortunately. When it comes to birth culture, there is a brutal separation between the haves and the have-nots ... and the people doing it think they're being kind, positive, feminist.
It's time we shut the fuck up about birth being natural. It is. And so, for both mother and baby, is dying of complications. Far more often than anyone wants to admit.
My best friend lost her baby at nine months recently. People rallied round ... and you know what came out? Lots of them had had the same experience. Losing a baby is not uncommon. But it was only when someone else's baby dies that it becomes acceptable to talk about it. Pregnancy and birth aren't magical lullabies on the loudspeaker: they are violent and dangerous and bad things can happen.
It's time we talked about this. It's bad enough when the dark side of birth happens to you; we have to stop adding this pretence that makes the people it happens to feel like shameful aberrations.
posted by Kit W at 1:30 AM on December 9, 2012 [26 favorites]
My daughter cam very close to being a preemie. They kept me pregnant in the end by having me mainline alcohol. Intravenous alcohol stopped the labor and left me pretty bombed.
I did not drink for eight years before that. I had doctors orders to drink at least three glasses of alcohol a day. More if I felt contractions. We had no wine in our home. I went and stayed with my parents a few days. ( turned into months.... Ended up going through a divorce... Long story)
My sister brought me some coffee liquor from Mexico. That suff shut things down in three sips until the Big Night.
Anyway the alcohol worked. My daughter lived, I went through a rather dramatic VBAC.
My daughter, once she could legally purchase alcohol at the Državani, used to get me a very small bottle of Kalua and a white rose as my Mother's Day gift.
She deserved a gift for hanging in there if you ask me.
posted by Katjusa Roquette at 2:52 AM on December 9, 2012 [10 favorites]
I did not drink for eight years before that. I had doctors orders to drink at least three glasses of alcohol a day. More if I felt contractions. We had no wine in our home. I went and stayed with my parents a few days. ( turned into months.... Ended up going through a divorce... Long story)
My sister brought me some coffee liquor from Mexico. That suff shut things down in three sips until the Big Night.
Anyway the alcohol worked. My daughter lived, I went through a rather dramatic VBAC.
My daughter, once she could legally purchase alcohol at the Državani, used to get me a very small bottle of Kalua and a white rose as my Mother's Day gift.
She deserved a gift for hanging in there if you ask me.
posted by Katjusa Roquette at 2:52 AM on December 9, 2012 [10 favorites]
I"m reminded of that story on Metafilter a while back of a poor 40 - 50 year old woman in the US with breast cancer who couldn't afford any treatment whatsoever. I think she had wandered into ER after one of her breasts had actually fallen off. - yes fallen off because she had not the money or time for any sort of treatment.
And yet if you are white and wealthy the modern health care system will spare no expense to try and save / breathe life into a micro-premies baby even though the chances of healthy life are relatively low.
Who says money can't buy everything...
posted by mary8nne at 3:11 AM on December 9, 2012 [2 favorites]
And yet if you are white and wealthy the modern health care system will spare no expense to try and save / breathe life into a micro-premies baby even though the chances of healthy life are relatively low.
Who says money can't buy everything...
posted by mary8nne at 3:11 AM on December 9, 2012 [2 favorites]
I joined MetaFilter to ask this question.
Our twins turned out okay, but this article brings back all the feelings of helplessness from that time.
NICUs can be extraordinarily profitable for hospitals. Absent regulatory constraint, they will continue to proliferate.
posted by meehawl at 11:41 PM on December 8 [3 favorites +] [!]
I recall in particular our visit to check out the NICU for the hospital we would deliver in, and our meeting with a hospital representative. When we brought up the subject of neonatal DNR orders, we were met with a stare like we had just announced we were from Venus and would they be able to meet our dietary requirements? When I mentioned we might consult with a lawyer about such a DNR order, the hospital rep wrote down "ATTORNEY!" on her legal pad and underlined it three times.
You cannot fathom, if you haven't been there, the momentum to keep younger and younger preemies alive in the hospital setting. Our takeaway as parents was that we were considered aberrant monsters for even daring to ask hard questions about viability.
posted by werkzeuger at 5:08 AM on December 9, 2012 [9 favorites]
Our twins turned out okay, but this article brings back all the feelings of helplessness from that time.
NICUs can be extraordinarily profitable for hospitals. Absent regulatory constraint, they will continue to proliferate.
posted by meehawl at 11:41 PM on December 8 [3 favorites +] [!]
I recall in particular our visit to check out the NICU for the hospital we would deliver in, and our meeting with a hospital representative. When we brought up the subject of neonatal DNR orders, we were met with a stare like we had just announced we were from Venus and would they be able to meet our dietary requirements? When I mentioned we might consult with a lawyer about such a DNR order, the hospital rep wrote down "ATTORNEY!" on her legal pad and underlined it three times.
You cannot fathom, if you haven't been there, the momentum to keep younger and younger preemies alive in the hospital setting. Our takeaway as parents was that we were considered aberrant monsters for even daring to ask hard questions about viability.
posted by werkzeuger at 5:08 AM on December 9, 2012 [9 favorites]
For the record I have thought of adopting, but shelling out 60k and with years of waiting is not something within my (and many other people's) means at the moment.
In the US, there is a tax credit* for adoptive parents, to help offset the cost of adoption. Also, $60,000 is on the high-end of adoption costs. Such a figure is typical of a couple going through a private attorney, rather than a licensed agency. There are also many alternative private methods of funding an adoption...grants and loans.
Additionally, the "years of waiting" applies primarily if you are insisting on a perfect white baby. One can much more easily adopt a minority or biracial baby within the first year, depending on how flexible you are as to the background of the mother and health risks the baby has been exposed to.
* The IRS page linked to talks of the 2010 and 2011 tax years. The tax credit is still in-place for 2012
posted by Thorzdad at 5:43 AM on December 9, 2012 [3 favorites]
In the US, there is a tax credit* for adoptive parents, to help offset the cost of adoption. Also, $60,000 is on the high-end of adoption costs. Such a figure is typical of a couple going through a private attorney, rather than a licensed agency. There are also many alternative private methods of funding an adoption...grants and loans.
Additionally, the "years of waiting" applies primarily if you are insisting on a perfect white baby. One can much more easily adopt a minority or biracial baby within the first year, depending on how flexible you are as to the background of the mother and health risks the baby has been exposed to.
* The IRS page linked to talks of the 2010 and 2011 tax years. The tax credit is still in-place for 2012
posted by Thorzdad at 5:43 AM on December 9, 2012 [3 favorites]
You can have two 24 weekers with completely different outcomes, depending on why they were premature. One might have been developing normally when his mother suddenly went into early labour because of a cervix issue, the other might have had a dying placenta and congenital deformities. Each baby has to be considered on a case-by-case basis because there are so many factors. The outcomes are also very variable. I know of premature twins born at the same time where one had a serious brain bleed and is quite challenged, while the other has developed regularly.
One of the most wonderful stories I learned when our 30-weeker was born a year ago during her 50 days in the NICU was about artificial surfactant and Dr Mary Ellen Avery. Bubbles, Babies and Biology is a good round-up of the discovery and production of this stuff that changed everything for preemies. My daughter had a dose of it when she was born.
The other is just how much the technology is changing. One nurse told me about how she used to have to hand-pump the ventilators for the babies in the 1960s-70s. Things like kangaroo care (a parent skin-to-skin holding a baby), new medication regimes - they used to always try to close PDAs, the normal hole in the heart that all babies are born with but preemies are often slow, but new research is pushing them to wait longer than start medication or surgery, new ventilators that are softer on tiny lungs - it is a rapidly changing medical field and amazing.
posted by viggorlijah at 6:17 AM on December 9, 2012 [4 favorites]
One of the most wonderful stories I learned when our 30-weeker was born a year ago during her 50 days in the NICU was about artificial surfactant and Dr Mary Ellen Avery. Bubbles, Babies and Biology is a good round-up of the discovery and production of this stuff that changed everything for preemies. My daughter had a dose of it when she was born.
The other is just how much the technology is changing. One nurse told me about how she used to have to hand-pump the ventilators for the babies in the 1960s-70s. Things like kangaroo care (a parent skin-to-skin holding a baby), new medication regimes - they used to always try to close PDAs, the normal hole in the heart that all babies are born with but preemies are often slow, but new research is pushing them to wait longer than start medication or surgery, new ventilators that are softer on tiny lungs - it is a rapidly changing medical field and amazing.
posted by viggorlijah at 6:17 AM on December 9, 2012 [4 favorites]
My son was born one day shy of 36 weeks, which technically made him a preemie. He wasn't breathing well on his own so he spent a week in NICU. Did I mention he was over 8 lbs? I can still feel the other parents glaring at me around the NICU nursery as my son weighed more than 4 of the other babies combined. On the other hand, it was rare that the nurses had a baby in there that they could hold, so he was being held by a nurse pretty much all day every day.
posted by COD at 6:19 AM on December 9, 2012
posted by COD at 6:19 AM on December 9, 2012
You cannot fathom, if you haven't been there, the momentum to keep younger and younger preemies alive in the hospital setting.
Some years back I read an article about IIRC the first 24-weeker to survive. The drumbeat background to the story of the heroic measures, was that this lower middle class family had given a DNR order which the doctor ignored and now they had a $1 million + bill which they would never be able to pay in addition to their triumphant new life.
Oh, and the anti-abortionists were already using them as an example to argue that abortion should be illegal at 24 weeks.
posted by localroger at 6:23 AM on December 9, 2012 [5 favorites]
Some years back I read an article about IIRC the first 24-weeker to survive. The drumbeat background to the story of the heroic measures, was that this lower middle class family had given a DNR order which the doctor ignored and now they had a $1 million + bill which they would never be able to pay in addition to their triumphant new life.
Oh, and the anti-abortionists were already using them as an example to argue that abortion should be illegal at 24 weeks.
posted by localroger at 6:23 AM on December 9, 2012 [5 favorites]
@COD, there was a similar regular-sized baby in the NICU the same time as us and we nicknamed him Sumo because he just seemed so enormous compared to all the little babies. He was a lovely loud baby and it was actually nice to see him and think "wow, someday she will be that big too"
posted by viggorlijah at 6:27 AM on December 9, 2012 [2 favorites]
posted by viggorlijah at 6:27 AM on December 9, 2012 [2 favorites]
If waiting for the next installments is killing you, you can google her and find out. Spoiler
posted by artychoke at 7:10 AM on December 9, 2012 [8 favorites]
posted by artychoke at 7:10 AM on December 9, 2012 [8 favorites]
And yet if you are white and wealthy the modern health care system will spare no expense to try and save / breathe life into a micro-premies baby even though the chances of healthy life are relatively low.
I get your point about the inequities of healthcare. As someone who spends a fair amount of time in NICUs and who routinely sees people die from lack of access to health care, this infuriates me. But it should be pointed out that in the United States, that literally 100% of prenatal and neonatal care is covered by State Children's Health Insuance Program (federal grants to Medicaid) and it generally pays well. Given the way poverty, education, and drug use influences the prematurity equation, the poor and minorities are way over represented in NICUs.
The place to put your outrage is here: we'll spend millions to save every preemie without batting an eye, but last year in Washington state we cut the program that provides rides for low income mothers to get to prenatal visits.
posted by Slarty Bartfast at 7:14 AM on December 9, 2012 [23 favorites]
I get your point about the inequities of healthcare. As someone who spends a fair amount of time in NICUs and who routinely sees people die from lack of access to health care, this infuriates me. But it should be pointed out that in the United States, that literally 100% of prenatal and neonatal care is covered by State Children's Health Insuance Program (federal grants to Medicaid) and it generally pays well. Given the way poverty, education, and drug use influences the prematurity equation, the poor and minorities are way over represented in NICUs.
The place to put your outrage is here: we'll spend millions to save every preemie without batting an eye, but last year in Washington state we cut the program that provides rides for low income mothers to get to prenatal visits.
posted by Slarty Bartfast at 7:14 AM on December 9, 2012 [23 favorites]
A friend of mine whose due date was just a couple days off mine when we were pregnant delivered at 25 weeks and a couple days. She spent over a week in a coma-like state (I don't know what it's called, she was kept unconscious and heavily medicated to stop labor) before they just couldn't stop it any longer and they delivered by C-section. They spent a long time in the NICU -- until after my son was born some 3 months later, though I don't recall exactly how long because I had a newborn -- and it was really wrenching, even for those of us just watching.
It was extra-hard for me to deal with, because I was pregnant with a baby the same age, and it was like watching your worst fears play out in real life, every single day. And it was hard to know what to do to help, because I'm sure my friend had similar feelings towards me, how hard it was to see me gigantically pregnant while her baby struggled for life in the NICU.
Anyway, the point of my story was going to be, her baby survived, and with really very few complications. But my friend had such bad PTSD from the stress and trauma of the birth and the NICU and so on, that it was literally a year after her son left the NICU before she could manage to make a phone call, which I think is something that doesn't get talked about enough -- the incredible stress this puts on mothers and fathers and marriages and older children. There was so much sense, afterwards, that they should "just be grateful" their baby had made it, which they were! And as everyone we know is in the baby phase of life, people didn't want to talk about it too much after it was over because it's so frightening and people are superstitious. They were able to be supportive while the baby was in the NICU, but once it had a happy ending, people just wanted to focus on the happy ending and not think about the horrifying, scary parts. But it was SO hard for my friend and she had SUCH serious psychological trauma from it. Even the happy endings have a lot of aftermath and those parents need a lot of support.
posted by Eyebrows McGee at 7:19 AM on December 9, 2012 [9 favorites]
It was extra-hard for me to deal with, because I was pregnant with a baby the same age, and it was like watching your worst fears play out in real life, every single day. And it was hard to know what to do to help, because I'm sure my friend had similar feelings towards me, how hard it was to see me gigantically pregnant while her baby struggled for life in the NICU.
Anyway, the point of my story was going to be, her baby survived, and with really very few complications. But my friend had such bad PTSD from the stress and trauma of the birth and the NICU and so on, that it was literally a year after her son left the NICU before she could manage to make a phone call, which I think is something that doesn't get talked about enough -- the incredible stress this puts on mothers and fathers and marriages and older children. There was so much sense, afterwards, that they should "just be grateful" their baby had made it, which they were! And as everyone we know is in the baby phase of life, people didn't want to talk about it too much after it was over because it's so frightening and people are superstitious. They were able to be supportive while the baby was in the NICU, but once it had a happy ending, people just wanted to focus on the happy ending and not think about the horrifying, scary parts. But it was SO hard for my friend and she had SUCH serious psychological trauma from it. Even the happy endings have a lot of aftermath and those parents need a lot of support.
posted by Eyebrows McGee at 7:19 AM on December 9, 2012 [9 favorites]
You know, if I had spent $10,000 on a nicer car instead of fertility treatments, no one would be suggesting that maybe I should have adopted a baby instead.
posted by bq at 7:59 AM on December 9, 2012 [26 favorites]
posted by bq at 7:59 AM on December 9, 2012 [26 favorites]
Interesting stuff. My mom was born in 1955 at 32 weeks and was in the hospital for the first three months of her life, and suffered no health issues whatsoever after that. At the time, it was considered a miracle.
posted by roomthreeseventeen at 8:03 AM on December 9, 2012
posted by roomthreeseventeen at 8:03 AM on December 9, 2012
When doctors say something is "most likely" to occur and then it doesn't...it's doesn't necessarily make those doctors wrong. It may just mean that in a particular circumstance that someone was able to "beat the odds" so to speak. It's more useful to investigate how that might have happened than it is to rush to label doctors as having been wrong. When you pay someone, who has skills you don't have, to help you make a decision they are giving you advice.
I'm not seeking to detract from the actuality or drama of anyone's anecdata regarding such personal stories, but if we're going to talk about science and ethics we need to be somewhat clear and consistent about how we use language.
posted by trackofalljades at 9:14 AM on December 9, 2012 [1 favorite]
I'm not seeking to detract from the actuality or drama of anyone's anecdata regarding such personal stories, but if we're going to talk about science and ethics we need to be somewhat clear and consistent about how we use language.
posted by trackofalljades at 9:14 AM on December 9, 2012 [1 favorite]
Mod note: Yeah, let's stop the "why not adopt rather than do fertility treatments" derail right now.
posted by LobsterMitten (staff) at 9:19 AM on December 9, 2012 [10 favorites]
posted by LobsterMitten (staff) at 9:19 AM on December 9, 2012 [10 favorites]
Phew, these articles are hard to read.
Legospaceman and Werkzeuger, I especially appreciate your comments.
When my kid was in the NICU, there was a framed photo of multiples on the pillar next to his bay. The kids were about 18 months in the photo, and had apparently spent about six months in the NICU. The photo had a "Thank you for saving us! Love, the miracle babies!" type of caption. In the photo, all of the kids still had squared-off preemie heads ("toasterhead") and two still wore nasal cannulas.
I looked at that picture all the time. At how it was hanging there as a tribute to miraculous outcomes. And I would think "Did nobody tell this family about selective reduction?" (The number of kids is basically not possible to conceive naturally.) And I would think "And if someone did, did the parents not understand the risk to all the kids if they decided against it? Did nobody tell them that preemies often have poor long-term outcomes? Or were they told all of this but somehow they did not understand what those percentages meant?"
(I hope it is clear that I am not thinking "These people are bad parents who made bad choices". The choices that people make for the very young are complicated and hard, and I don't have any answers. I think I am just not a person who looks at numbers like 75% and assumes that my child will definitely be in the 25%.)
My husband and I asked a lot of questions about outcome while we were in the NICU. I repeatedly got the feeling that this was abnormal. That we were weirdos. Anytime we asked anything about outcomes, it seemed very much like people were not used to hearing these questions, and like they didn't really know how to respond without cheerleading. Nobody wanted to say anything about longterm risks (and we asked). It was just "Most babies of this gestational age do great!" and I would ask "What do you mean by "great"?" and they would waffle, and it would turn out that they meant "No major disabilities", and I would ask about things like asthma, and they would get tense and uncomfortable.
When we first met the neonatologist, he introduced himself as "The baby doctor". And okay, I understand that there must be lots of people in hospital settings who don't know what a neonatologist is, but it was... it was so weird and unsettling to me. I felt like a lot of things about the NICU experience (and we were in a great NICU) had been dumbed down so much that you were constantly at risk of, in the interests of maintaining your morale, being given poor information.
Our kid came out of his early birth totally unscathed. It seems that he has zero long-term things related to his prematurity, and is developing as a full-term kid would. But I feel like that is just, you know, luck. What if he had been a couple of days earlier, or if the stress hormones in my body had not told his body to finish making his lungs ASAP? I sometimes think about how there is maybe a tiny, benevolent conspiracy of cheerfulness about premature babies and their outcomes. There were some micro-preemie twins in our NICU, and they had real problems, fevers, they were miniscule. I sometimes wonder what happened to them. I wonder if those parents got enough realistic non-cheerleady information to make compassionate decisions for those kids.
I don't know. Maybe this makes me sound like a terrible person. But my husband and I have talked extensively about all of this, and even though our child and I were saved by modern medicine, if we ever had another kid, and the kid was significantly premature, I am pretty sure we would remain firm in our preference for no extraordinary measures.
And as Eyebrows McGee says, I think NICU-related PTSD is actually super, super common. It was surprising to me how little people talked about it.
posted by thehmsbeagle at 11:11 AM on December 9, 2012 [12 favorites]
Legospaceman and Werkzeuger, I especially appreciate your comments.
When my kid was in the NICU, there was a framed photo of multiples on the pillar next to his bay. The kids were about 18 months in the photo, and had apparently spent about six months in the NICU. The photo had a "Thank you for saving us! Love, the miracle babies!" type of caption. In the photo, all of the kids still had squared-off preemie heads ("toasterhead") and two still wore nasal cannulas.
I looked at that picture all the time. At how it was hanging there as a tribute to miraculous outcomes. And I would think "Did nobody tell this family about selective reduction?" (The number of kids is basically not possible to conceive naturally.) And I would think "And if someone did, did the parents not understand the risk to all the kids if they decided against it? Did nobody tell them that preemies often have poor long-term outcomes? Or were they told all of this but somehow they did not understand what those percentages meant?"
(I hope it is clear that I am not thinking "These people are bad parents who made bad choices". The choices that people make for the very young are complicated and hard, and I don't have any answers. I think I am just not a person who looks at numbers like 75% and assumes that my child will definitely be in the 25%.)
My husband and I asked a lot of questions about outcome while we were in the NICU. I repeatedly got the feeling that this was abnormal. That we were weirdos. Anytime we asked anything about outcomes, it seemed very much like people were not used to hearing these questions, and like they didn't really know how to respond without cheerleading. Nobody wanted to say anything about longterm risks (and we asked). It was just "Most babies of this gestational age do great!" and I would ask "What do you mean by "great"?" and they would waffle, and it would turn out that they meant "No major disabilities", and I would ask about things like asthma, and they would get tense and uncomfortable.
When we first met the neonatologist, he introduced himself as "The baby doctor". And okay, I understand that there must be lots of people in hospital settings who don't know what a neonatologist is, but it was... it was so weird and unsettling to me. I felt like a lot of things about the NICU experience (and we were in a great NICU) had been dumbed down so much that you were constantly at risk of, in the interests of maintaining your morale, being given poor information.
Our kid came out of his early birth totally unscathed. It seems that he has zero long-term things related to his prematurity, and is developing as a full-term kid would. But I feel like that is just, you know, luck. What if he had been a couple of days earlier, or if the stress hormones in my body had not told his body to finish making his lungs ASAP? I sometimes think about how there is maybe a tiny, benevolent conspiracy of cheerfulness about premature babies and their outcomes. There were some micro-preemie twins in our NICU, and they had real problems, fevers, they were miniscule. I sometimes wonder what happened to them. I wonder if those parents got enough realistic non-cheerleady information to make compassionate decisions for those kids.
I don't know. Maybe this makes me sound like a terrible person. But my husband and I have talked extensively about all of this, and even though our child and I were saved by modern medicine, if we ever had another kid, and the kid was significantly premature, I am pretty sure we would remain firm in our preference for no extraordinary measures.
And as Eyebrows McGee says, I think NICU-related PTSD is actually super, super common. It was surprising to me how little people talked about it.
posted by thehmsbeagle at 11:11 AM on December 9, 2012 [12 favorites]
I looked at that picture all the time. At how it was hanging there as a tribute to miraculous outcomes. And I would think "Did nobody tell this family about selective reduction?" (The number of kids is basically not possible to conceive naturally.) And I would think "And if someone did, did the parents not understand the risk to all the kids if they decided against it? Did nobody tell them that preemies often have poor long-term outcomes? Or were they told all of this but somehow they did not understand what those percentages meant?"
Thank you so much for saying something like this. We terminated an earlier pregnancy because of a severe fetal defect, and the genetic counselor we were working with didn't even broach the subject of termination until I brought it up, pointing out that we were days away from our state's legal limit for gestational age.
It's a tough thing to talk about. Sometimes loving your baby might mean letting go, or even saying no to bearing it in the first place. That's not an idea everybody can wrap their head around, I think. But my experience has convinced me the medical establishment really doesn't want to help people think about these issues. It's far easier to not have those conversations, and more profitable to keep more and more babies alive, with the increasing number of "pillow angels" as an acceptable cost.
posted by werkzeuger at 11:56 AM on December 9, 2012 [10 favorites]
Thank you so much for saying something like this. We terminated an earlier pregnancy because of a severe fetal defect, and the genetic counselor we were working with didn't even broach the subject of termination until I brought it up, pointing out that we were days away from our state's legal limit for gestational age.
It's a tough thing to talk about. Sometimes loving your baby might mean letting go, or even saying no to bearing it in the first place. That's not an idea everybody can wrap their head around, I think. But my experience has convinced me the medical establishment really doesn't want to help people think about these issues. It's far easier to not have those conversations, and more profitable to keep more and more babies alive, with the increasing number of "pillow angels" as an acceptable cost.
posted by werkzeuger at 11:56 AM on December 9, 2012 [10 favorites]
My wife and I had similar discussions about our son. I'm not going to lie, sometimes he looked like he was incredibly uncomfortable, in pain, distress (especially with the ventilator) and we wondered if we were being selfish, forcing pain and suffering on our son.
Now when I see my son smiling, playing, growing, learning etc of course it seems like the right decision, but that's with the benefit of hindsight. At the time I just thought that, you know, he could have been born blue, not breathing, not crying, not moving, no heartbeat. But he wasn't. He beat those odds, I kinda felt like he was doing his all to stay alive and we should at least give him the best chance we could.
You and your son are very very lucky, indeed, and I am very glad that he beat the odds and gives you so much joy. Kids are a riot, I'm certainly grateful for mine, even if birthing the youngest imperiled my health (I had a small stroke while in labor with him. It was...interesting.)
My baby cousin never had a chance, no matter how hard he fought to live, it was not going to happen. His lungs were severely underdeveloped, he had myriad other problems as a result of his prematurity, and the docs told his mother flat out that the odds of him living even a week, even with heroic measures, were slim. She insisted, though, and that little one suffered mightily until his tiny little lungs just gave up. It broke my heart, and it broke up his parents' relationship.
posted by MissySedai at 11:59 AM on December 9, 2012
Now when I see my son smiling, playing, growing, learning etc of course it seems like the right decision, but that's with the benefit of hindsight. At the time I just thought that, you know, he could have been born blue, not breathing, not crying, not moving, no heartbeat. But he wasn't. He beat those odds, I kinda felt like he was doing his all to stay alive and we should at least give him the best chance we could.
You and your son are very very lucky, indeed, and I am very glad that he beat the odds and gives you so much joy. Kids are a riot, I'm certainly grateful for mine, even if birthing the youngest imperiled my health (I had a small stroke while in labor with him. It was...interesting.)
My baby cousin never had a chance, no matter how hard he fought to live, it was not going to happen. His lungs were severely underdeveloped, he had myriad other problems as a result of his prematurity, and the docs told his mother flat out that the odds of him living even a week, even with heroic measures, were slim. She insisted, though, and that little one suffered mightily until his tiny little lungs just gave up. It broke my heart, and it broke up his parents' relationship.
posted by MissySedai at 11:59 AM on December 9, 2012
A relative of mine was born 10 weeks early in the mid-1970s and survived with no noticeable complications, and just a month in the NICU to fatten her up. Her younger brother, born at about the same gestational age a couple of years later, died after a day or two. The neonatologists were gung-ho about keeping him alive by any means necessary. It was the family's (truly excellent) pediatrician who went to the mother's room and said, "They consider it success just to send a baby home. You and I are the ones who will have to take care of this baby for the rest of his life." As it turned out, he was too small and weak for even the best of what medical science had to offer at the time, but if it had been an edge case there would have been a lot more conflict between the neonatologist's goals -- keep the baby alive -- and the pediatrician's and mother's goals -- help the baby have a good quality of life.
posted by katemonster at 12:00 PM on December 9, 2012 [1 favorite]
posted by katemonster at 12:00 PM on December 9, 2012 [1 favorite]
When we first met the neonatologist, he introduced himself as "The baby doctor".
This is a real problem and has been for a long time. I was born in 1964. My parents were using the Rhythm Method, so they knew exactly which argument had caused exactly which period to be delayed and so they knew exactly when I was conceived. And so, within a week of missing her next period, her health not being all that good generally my mother was at the doctor's office.
So they told Dr. J when I could be expected and he steadfastly refused to believe them. There was a formula he had been taught, that suggested parents only get suspicious after an average of 10 weeks, and so he insisted I was expected to be born about 5 weeks sooner than my parents thought.
During that last month he harangued them to let him induce labor, taking the fact that my mother was having difficulties as evidence that one of those difficulties was lateness. According to my parents he was starting to make noises about quitting as her doctor if she didn't agree to the procedure when I came along, exactly 280 days after I was conceived.
I wasn't premature but I still almost died, my mother almost died, and we both stayed in the hospital more than a week, for other reasons.
The doctor wasn't finished treating my parents like infants themselves though. Six months after I was born my parents moved to California for my father to fufill his military obligation which was a condition of his postdoctorate fellowship. About a year after my birth my grandmother went to the doctor for her annual checkup, and he asked after my parents. When he was told they had moved, he became very agitated and insisted, "You must call them! You must call them today! If K tries to deliver another child she will certainly die!"
When asked why he had neglected to give my parents this rather important bit of advice at a more appropriate time, such as when we were discharged from the hospital, he said he was waiting for a more appropriate time to risk upsetting her.
Grandma called just as they were getting ready to ditch the birth control pills and try to give me a sibling.
posted by localroger at 12:01 PM on December 9, 2012
This is a real problem and has been for a long time. I was born in 1964. My parents were using the Rhythm Method, so they knew exactly which argument had caused exactly which period to be delayed and so they knew exactly when I was conceived. And so, within a week of missing her next period, her health not being all that good generally my mother was at the doctor's office.
So they told Dr. J when I could be expected and he steadfastly refused to believe them. There was a formula he had been taught, that suggested parents only get suspicious after an average of 10 weeks, and so he insisted I was expected to be born about 5 weeks sooner than my parents thought.
During that last month he harangued them to let him induce labor, taking the fact that my mother was having difficulties as evidence that one of those difficulties was lateness. According to my parents he was starting to make noises about quitting as her doctor if she didn't agree to the procedure when I came along, exactly 280 days after I was conceived.
I wasn't premature but I still almost died, my mother almost died, and we both stayed in the hospital more than a week, for other reasons.
The doctor wasn't finished treating my parents like infants themselves though. Six months after I was born my parents moved to California for my father to fufill his military obligation which was a condition of his postdoctorate fellowship. About a year after my birth my grandmother went to the doctor for her annual checkup, and he asked after my parents. When he was told they had moved, he became very agitated and insisted, "You must call them! You must call them today! If K tries to deliver another child she will certainly die!"
When asked why he had neglected to give my parents this rather important bit of advice at a more appropriate time, such as when we were discharged from the hospital, he said he was waiting for a more appropriate time to risk upsetting her.
Grandma called just as they were getting ready to ditch the birth control pills and try to give me a sibling.
posted by localroger at 12:01 PM on December 9, 2012
The main article seemed very familiar, and then I realized I was thinking of this article, published in Slate about a month ago. I thought it provided an excellent perspective on the issue of when to take extraordinary measures and when not to.
posted by devinemissk at 12:15 PM on December 9, 2012 [4 favorites]
posted by devinemissk at 12:15 PM on December 9, 2012 [4 favorites]
It's a tough thing to talk about. Sometimes loving your baby might mean letting go, or even saying no to bearing it in the first place. That's not an idea everybody can wrap their head around, I think. But my experience has convinced me the medical establishment really doesn't want to help people think about these issues. It's far easier to not have those conversations, and more profitable to keep more and more babies alive, with the increasing number of "pillow angels" as an acceptable cost.
I totally agree. On the other end of life, this seems to also be an issue with end-of-life care for elders. I'm not sure why so many medical caregivers (who I am pretty sure surveys show are themselves very into DNR orders) have such a difficult time initiating conversations about quality of life and when to let go.
And I am sorry that your family was faced with the difficult decision to terminate. I think it is a really brave and compassionate thing to do in many circumstances. And I'm sorry (and slightly appalled) that you were the ones who had to put this option on the table yourselves.
The article devinemissk posted is excellent.
posted by thehmsbeagle at 12:34 PM on December 9, 2012
I totally agree. On the other end of life, this seems to also be an issue with end-of-life care for elders. I'm not sure why so many medical caregivers (who I am pretty sure surveys show are themselves very into DNR orders) have such a difficult time initiating conversations about quality of life and when to let go.
And I am sorry that your family was faced with the difficult decision to terminate. I think it is a really brave and compassionate thing to do in many circumstances. And I'm sorry (and slightly appalled) that you were the ones who had to put this option on the table yourselves.
The article devinemissk posted is excellent.
posted by thehmsbeagle at 12:34 PM on December 9, 2012
...I'm sorry (and slightly appalled) that you were the ones who had to put this option on the table yourselves.
Well the elephant in this room is of course the abortion rights debate; I can imagine people in health care don't want to be seen as promoting or taking a side (i.e. having their head bitten off and complaints made just for bringing it up), and I guess I can sympathize a little bit. But I should note that it wasn't just the termination option that wasn't brought up, but information about the reality of life with a child that had the defect in question. We were told what the defect was in the simplest terms possible, and that the hospital had a Very Good Doctor who was an expert at treating such defects and keeping those babies alive. It was only because my wife was an advance practice RN in this hospital that she knew that a) Very Good Doctor was also Very Catholic Doctor and had a history of aggressive, optimistic intervention, b) kids with our defect frequently had a life of painful multiple surgeries and hospital admits, and c) our lives (and more importantly that baby's) would likely be fucked.
So she had this special knowledge and access, and on top of that we're white, educated and upper-middle class. It's entirely possible someone without those advantages would have brought that baby into this world. Now, maybe they would have chose differently for deeply held moral or religious reasons, and I have the utmost respect for that. But their choice wouldn't have been fully informed, a situation that also seems to obtain in many of these extreme preemie cases.
posted by werkzeuger at 12:54 PM on December 9, 2012 [4 favorites]
Well the elephant in this room is of course the abortion rights debate; I can imagine people in health care don't want to be seen as promoting or taking a side (i.e. having their head bitten off and complaints made just for bringing it up), and I guess I can sympathize a little bit. But I should note that it wasn't just the termination option that wasn't brought up, but information about the reality of life with a child that had the defect in question. We were told what the defect was in the simplest terms possible, and that the hospital had a Very Good Doctor who was an expert at treating such defects and keeping those babies alive. It was only because my wife was an advance practice RN in this hospital that she knew that a) Very Good Doctor was also Very Catholic Doctor and had a history of aggressive, optimistic intervention, b) kids with our defect frequently had a life of painful multiple surgeries and hospital admits, and c) our lives (and more importantly that baby's) would likely be fucked.
So she had this special knowledge and access, and on top of that we're white, educated and upper-middle class. It's entirely possible someone without those advantages would have brought that baby into this world. Now, maybe they would have chose differently for deeply held moral or religious reasons, and I have the utmost respect for that. But their choice wouldn't have been fully informed, a situation that also seems to obtain in many of these extreme preemie cases.
posted by werkzeuger at 12:54 PM on December 9, 2012 [4 favorites]
The bigger elephant in the room is the lawyers. This is a 2007 review of the court decisions over time and the world, from those allowing parents and family physicians discretion, to the USA case of Miller vs HCA where parents' decisions were completely overridden, and their lawsuit to recoup medical expenses and long term care were lost as the courts ruled "parental decisions could not be made until the infant was evaluated after birth. The emergency circumstances at the infant's birth required immediate treatment to preserve her life and overrode the requirement of seeking parental consent or a court order to proceed against the parents' refusal to consent."
The review also touches on some of the "who should decide issues" and notes that while parents differ in this regard, many have no long term recollection of who gave them what info and how the decisions were made.
Personally, I expect the legal side will likely get worse before it gets better. Prenatal genetic counselors may be limited/restricted by hospital policies as to what they can offer (vs answering what you ask) and assorted states in the USA have put forth bills wherein "a doctor could not be sued for medical malpractice if the doctor withholds information from a mother about a child's potential health issues that could influence her decision to have an abortion. In addition, a lawsuit could not be filed on the child's behalf regarding a disability. "
Fortunately prenatal hospices are finally arriving. But those have their own issues, esp in regards to premies.
posted by beaning at 2:29 PM on December 9, 2012 [3 favorites]
The review also touches on some of the "who should decide issues" and notes that while parents differ in this regard, many have no long term recollection of who gave them what info and how the decisions were made.
Personally, I expect the legal side will likely get worse before it gets better. Prenatal genetic counselors may be limited/restricted by hospital policies as to what they can offer (vs answering what you ask) and assorted states in the USA have put forth bills wherein "a doctor could not be sued for medical malpractice if the doctor withholds information from a mother about a child's potential health issues that could influence her decision to have an abortion. In addition, a lawsuit could not be filed on the child's behalf regarding a disability. "
Fortunately prenatal hospices are finally arriving. But those have their own issues, esp in regards to premies.
posted by beaning at 2:29 PM on December 9, 2012 [3 favorites]
Sometimes loving your baby might mean letting go, or even saying no to bearing it in the first place. That's not an idea everybody can wrap their head around, I think.
We have such a weird culture around babies in the US, that they must be "protected" at all costs, that they MUST be brought into the world regardless of what their quality of life would be. The narrative goes that if you choose to terminate because the child would either live only a very short time, or be profoundly disabled, you didn't love the child enough to deserve one anyway. It's such a baffling and selfish point of view, and I cannot relate to it at all. I cannot imagine forcing a child into a life of suffering because, hey, life! That's not life at all.
I was very fortunate with both of my sons. My doc is the regional director of Planned Parenthood in my area, and he is all about information, information, information. When a routine blood test during Younger Monster's gestation came back funky, he presented ALL of the options available to me, including eventual termination if things had gone completely off the rails. I opted for amnio and waiting for confirmation, even though it would have meant a much more difficult second trimester termination if it came to that. Thankfully, he was fine, the blood test was a false alarm. But having a doc who was all about being honest and practical made a huge difference in my mental well being and helped me brace myself for the possibility of letting him go.
(Younger Monster is nearly 17 now. He was a HORRIBLE pregnancy and a frightening labor and delivery! To make up for it, he's been a GREAT kid.)
posted by MissySedai at 3:02 PM on December 9, 2012 [4 favorites]
We have such a weird culture around babies in the US, that they must be "protected" at all costs, that they MUST be brought into the world regardless of what their quality of life would be. The narrative goes that if you choose to terminate because the child would either live only a very short time, or be profoundly disabled, you didn't love the child enough to deserve one anyway. It's such a baffling and selfish point of view, and I cannot relate to it at all. I cannot imagine forcing a child into a life of suffering because, hey, life! That's not life at all.
I was very fortunate with both of my sons. My doc is the regional director of Planned Parenthood in my area, and he is all about information, information, information. When a routine blood test during Younger Monster's gestation came back funky, he presented ALL of the options available to me, including eventual termination if things had gone completely off the rails. I opted for amnio and waiting for confirmation, even though it would have meant a much more difficult second trimester termination if it came to that. Thankfully, he was fine, the blood test was a false alarm. But having a doc who was all about being honest and practical made a huge difference in my mental well being and helped me brace myself for the possibility of letting him go.
(Younger Monster is nearly 17 now. He was a HORRIBLE pregnancy and a frightening labor and delivery! To make up for it, he's been a GREAT kid.)
posted by MissySedai at 3:02 PM on December 9, 2012 [4 favorites]
We have such a weird culture around babies in the US, that they must be "protected" at all costs, that they MUST be brought into the world regardless of what their quality of life would be. The narrative goes that if you choose to terminate because the child would either live only a very short time, or be profoundly disabled, you didn't love the child enough to deserve one anyway. It's such a baffling and selfish point of view, and I cannot relate to it at all. I cannot imagine forcing a child into a life of suffering because, hey, life! That's not life at all.
Pretty much this. My husband and I are in agreement that if there's something seriously wrong with our baby, should I get pregnant, we will terminate. My family doesn't think this is right, but they don't have to. It's our decision.
I hate to think there are people who are trying to take that decision away from others.
posted by Malice at 6:12 PM on December 9, 2012 [2 favorites]
Pretty much this. My husband and I are in agreement that if there's something seriously wrong with our baby, should I get pregnant, we will terminate. My family doesn't think this is right, but they don't have to. It's our decision.
I hate to think there are people who are trying to take that decision away from others.
posted by Malice at 6:12 PM on December 9, 2012 [2 favorites]
The look of pure angish, despair, and hope combined to one on that father's face....mind etching.
I feel for them.
posted by stormpooper at 7:59 AM on December 10, 2012
I feel for them.
posted by stormpooper at 7:59 AM on December 10, 2012
...coincidentally, a friend's wife just gave birth this morning to a 25 weeker, weighing in just a smidge under 2 pounds. They are taking things hour by hour, and I am very worried for them.
posted by MissySedai at 11:10 AM on December 10, 2012
posted by MissySedai at 11:10 AM on December 10, 2012
You cannot fathom, if you haven't been there, the momentum to keep younger and younger preemies alive in the hospital setting. Our takeaway as parents was that we were considered aberrant monsters for even daring to ask hard questions about viability.
I don't intend to deny your experience, it's just striking to see how the practice varies. When my wife and I were facing delivery at 24 weeks (of twins, and with some additional factors), a neonatologist sat with us for a very grave talk about the high odds of death or disabilities, and asked us to think through a treatment plan to be written down.
He laid out the decisions we would be asked to make for each child at delivery: whether to use mechanical ventilation, whether to use CPR, whether to use epinephrine in CPR, if any treatment applied then decide on a 30-second cycle whether to continue, if the child is stabilized then whether to withdraw treatment later. That it was our decision, and an impossible decision to make, and that no one could say we had made the wrong choice. He was trying to be non-directive, and I think succeeded, but if anything I'd say he was trying to give the parents permission not to treat.
(Or course I don't know what gestational age and medical situation you were asking about, and it all depends completely on that. Eventually it blends into the old question of whether and when a parent should ever be considered negligent not to seek certain medical care for a child.)
posted by away for regrooving at 2:08 AM on December 11, 2012
I don't intend to deny your experience, it's just striking to see how the practice varies. When my wife and I were facing delivery at 24 weeks (of twins, and with some additional factors), a neonatologist sat with us for a very grave talk about the high odds of death or disabilities, and asked us to think through a treatment plan to be written down.
He laid out the decisions we would be asked to make for each child at delivery: whether to use mechanical ventilation, whether to use CPR, whether to use epinephrine in CPR, if any treatment applied then decide on a 30-second cycle whether to continue, if the child is stabilized then whether to withdraw treatment later. That it was our decision, and an impossible decision to make, and that no one could say we had made the wrong choice. He was trying to be non-directive, and I think succeeded, but if anything I'd say he was trying to give the parents permission not to treat.
(Or course I don't know what gestational age and medical situation you were asking about, and it all depends completely on that. Eventually it blends into the old question of whether and when a parent should ever be considered negligent not to seek certain medical care for a child.)
posted by away for regrooving at 2:08 AM on December 11, 2012
The narrative goes that if you choose to terminate because the child would either live only a very short time, or be profoundly disabled, you didn't love the child enough to deserve one anyway. It's such a baffling and selfish point of view, and I cannot relate to it at all. I cannot imagine forcing a child into a life of suffering because, hey, life! That's not life at all.
Not saying you are doing the same thing, but this reminds me: it disturbs me when discussion of medical risks talks about "X% chance of death or serious disability" (or whatever qualifier on type of disability). Because putting death and serious disability together under one percentage is missing something important. Serious disability is not death. And a decision that disability is like death or worse, well, I think at least most people will agree that we can't sensibly make that about disability in general categories, but only by looking at specific outcomes. Blindness, for example, is categorized as "severe disability" in some preemie morbidity studies, but many people will say wait, I can imagine living with blindness, that's not like a living death. It's not always possible in the time available, but I think it's very useful to talk to someone who has the condition there's a risk of, or a parent of a child with it, or at least search up somebody's blog and read it.
(I am almost never going to try to judge someone else's decision in an area like this, but it is certainly tempting to judge their decision-making methodology, like I'm doing here. Maybe one day I'll find out I was wrong to try that.)
posted by away for regrooving at 2:39 AM on December 11, 2012
Not saying you are doing the same thing, but this reminds me: it disturbs me when discussion of medical risks talks about "X% chance of death or serious disability" (or whatever qualifier on type of disability). Because putting death and serious disability together under one percentage is missing something important. Serious disability is not death. And a decision that disability is like death or worse, well, I think at least most people will agree that we can't sensibly make that about disability in general categories, but only by looking at specific outcomes. Blindness, for example, is categorized as "severe disability" in some preemie morbidity studies, but many people will say wait, I can imagine living with blindness, that's not like a living death. It's not always possible in the time available, but I think it's very useful to talk to someone who has the condition there's a risk of, or a parent of a child with it, or at least search up somebody's blog and read it.
(I am almost never going to try to judge someone else's decision in an area like this, but it is certainly tempting to judge their decision-making methodology, like I'm doing here. Maybe one day I'll find out I was wrong to try that.)
posted by away for regrooving at 2:39 AM on December 11, 2012
Not saying you are doing the same thing, but this reminds me: it disturbs me when discussion of medical risks talks about "X% chance of death or serious disability" (or whatever qualifier on type of disability). Because putting death and serious disability together under one percentage is missing something important. Serious disability is not death. And a decision that disability is like death or worse, well, I think at least most people will agree that we can't sensibly make that about disability in general categories, but only by looking at specific outcomes.
Of course it's a decision based on specific outcomes. A physician who doesn't discuss specific outcomes is irresponsible at best, actively incompetent at worst.
Myself, I don't consider blindness or deafness to be "profound" disabilities - there are ways to work around those and adapt. But a child who is not going to leave the hospital because he's anencephalic? A child who may live a few months or years, but will be permanently unable to interact with the world around him? Yeah, no. I don't buy into the notion that "god doesn't give you more than you can handle" that many people do. And I don't buy into the notion that "all life is precious", simply because it's life, either.
As I said before, quality of life matters. It does to me, anyway, and if it had turned out that Younger Monster was not going to live long after birth anyway, I would have terminated. Not because I didn't love him and didn't "deserve" him, but precisely because I loved him AND his older brother enough to know that it would have been cruel to both of them to force one into the world in order to suffer and die in days or months, and to force the other to have to deal with the death of his much wanted baby brother in such a fashion.
(I am almost never going to try to judge someone else's decision in an area like this, but it is certainly tempting to judge their decision-making methodology, like I'm doing here. Maybe one day I'll find out I was wrong to try that.)
I certainly think you're wrong to try it. Their circumstances are not yours, and while you've dealt with similar, you don't know what others are specifically dealing with. Their pain and fright might not be the same as yours was, but it's pain and fright all the same.
posted by MissySedai at 11:51 AM on December 12, 2012 [2 favorites]
Of course it's a decision based on specific outcomes. A physician who doesn't discuss specific outcomes is irresponsible at best, actively incompetent at worst.
Myself, I don't consider blindness or deafness to be "profound" disabilities - there are ways to work around those and adapt. But a child who is not going to leave the hospital because he's anencephalic? A child who may live a few months or years, but will be permanently unable to interact with the world around him? Yeah, no. I don't buy into the notion that "god doesn't give you more than you can handle" that many people do. And I don't buy into the notion that "all life is precious", simply because it's life, either.
As I said before, quality of life matters. It does to me, anyway, and if it had turned out that Younger Monster was not going to live long after birth anyway, I would have terminated. Not because I didn't love him and didn't "deserve" him, but precisely because I loved him AND his older brother enough to know that it would have been cruel to both of them to force one into the world in order to suffer and die in days or months, and to force the other to have to deal with the death of his much wanted baby brother in such a fashion.
(I am almost never going to try to judge someone else's decision in an area like this, but it is certainly tempting to judge their decision-making methodology, like I'm doing here. Maybe one day I'll find out I was wrong to try that.)
I certainly think you're wrong to try it. Their circumstances are not yours, and while you've dealt with similar, you don't know what others are specifically dealing with. Their pain and fright might not be the same as yours was, but it's pain and fright all the same.
posted by MissySedai at 11:51 AM on December 12, 2012 [2 favorites]
I can see how my post might read as a hint towards an all-life-is-sacred agenda, so to be clear, there are situations where I would choose to end a child's life. (Oh, that "Serious disability is not death" in particular could sound like "No disability is as bad as death.")
I certainly think you're wrong to try it. Their circumstances are not yours [...]
Am I misreading your "Of course it's a decision based on specific outcomes", that if I made the decision without information about specific outcomes, that's not the best way to go about it? That's the judgement on methodology I meant. How someone uses that information (including choosing to ignore it), and what decision they come to, I couldn't possibly judge.
On the other hand -- pretty sure the neonatologist who spoke with us did not get specific to the level of enumerating what's included when he says "profound" disability. And to me that doesn't make him irresponsible or incompetent. There are so many, many possible outcomes here that have a substantial chance of happening, that he has to start with some summarization, and it's not easy to be sure where to add detail for better decisions, instead of worse. We all have limits in what we can absorb and use, especially with a short deadline to decide. It's my feeling, though, that it's practically always worth breaking out "death (50%) or severe disability (20%)", and usually to list the most likely few disabilities there.
tl;dr I wish that everybody faced with this kind of decision could be informed, oh, what it's like to have different levels of cerebral palsy, and a thousand other things, but it's damn hard to narrow that down to five.
posted by away for regrooving at 1:31 AM on December 13, 2012
I certainly think you're wrong to try it. Their circumstances are not yours [...]
Am I misreading your "Of course it's a decision based on specific outcomes", that if I made the decision without information about specific outcomes, that's not the best way to go about it? That's the judgement on methodology I meant. How someone uses that information (including choosing to ignore it), and what decision they come to, I couldn't possibly judge.
On the other hand -- pretty sure the neonatologist who spoke with us did not get specific to the level of enumerating what's included when he says "profound" disability. And to me that doesn't make him irresponsible or incompetent. There are so many, many possible outcomes here that have a substantial chance of happening, that he has to start with some summarization, and it's not easy to be sure where to add detail for better decisions, instead of worse. We all have limits in what we can absorb and use, especially with a short deadline to decide. It's my feeling, though, that it's practically always worth breaking out "death (50%) or severe disability (20%)", and usually to list the most likely few disabilities there.
tl;dr I wish that everybody faced with this kind of decision could be informed, oh, what it's like to have different levels of cerebral palsy, and a thousand other things, but it's damn hard to narrow that down to five.
posted by away for regrooving at 1:31 AM on December 13, 2012
The second installment was posted on Tuesday.
It's an emotionally wrenching read. I found getting through the first article quite difficult.
This one is devastating: "For micropreemie in NICU, each moment is a fight for existence.
posted by zarq at 5:57 AM on December 13, 2012
It's an emotionally wrenching read. I found getting through the first article quite difficult.
This one is devastating: "For micropreemie in NICU, each moment is a fight for existence.
posted by zarq at 5:57 AM on December 13, 2012
Am I misreading your "Of course it's a decision based on specific outcomes", that if I made the decision without information about specific outcomes, that's not the best way to go about it?
Yes, you are misreading it. I am referencing physicians providing information, not parents faced with tough choices making those choices.
Perhaps I am very lucky, in that my physician was all about the details.
posted by MissySedai at 8:17 AM on December 13, 2012
Yes, you are misreading it. I am referencing physicians providing information, not parents faced with tough choices making those choices.
Perhaps I am very lucky, in that my physician was all about the details.
posted by MissySedai at 8:17 AM on December 13, 2012
That second installment...I want to quote from it but I don't want to cause anyone to find themselves taken by surprise and crying in a cubicle at work, but the writing is incredible and the story is almost unbearable.
posted by A Terrible Llama at 12:37 PM on December 13, 2012
posted by A Terrible Llama at 12:37 PM on December 13, 2012
Yeah, I'm really glad I checked out the "spoiler" link above; it's made it possible to keep reading the series.
posted by jokeefe at 1:46 PM on December 13, 2012
posted by jokeefe at 1:46 PM on December 13, 2012
It was a mistake to read Part Three at work since I'm trying to look professional and hold back tears at the same time - but all I can say is that really moved me and at times took me right back to our 3 months in the NICU.
posted by Admira at 8:29 PM on December 13, 2012 [1 favorite]
posted by Admira at 8:29 PM on December 13, 2012 [1 favorite]
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posted by emjaybee at 8:30 PM on December 8, 2012 [6 favorites]