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I wish doctors would spend more time figuring out why babies die instead of figuring out how to make more. I have a friend whose wife has had five full-term sti

I wish doctors would spend more time figuring out why babies die instead of figuring out how to make more. I have a friend whose wife has had five full-term stillbirths, with no explanation. Babies all tested as perfectly healthy. My wife and I just lost a perfect baby boy mid-pregnancy, with no explanation. A few others I know have lost otherwise healthy infants in the first years of life, again no explanation, despite multiple doctors. It's wonderful we can make a human egg and all, but we still can't figure out why babies die, so forgive me if we're still not that impressed by medicine, and think we're misallocating resources.

dgritsko 9y ago
Just wanted to say that I'm sorry for your loss.
gph 9y ago
>so forgive me if we're still not that impressed by medicine. I get you're venting some pain here, but that's kind of looking a gift horse in the mouth. Modern medicine hasn't figured out every single mystery, but it's certainly impressive what we have figured out.
- tathougies 9y ago
  There is no medical specialty dedicated to anyone who loses an infant or pregnancy, but there is a whole industry dedicated to creating new embryos and conceiving. Seriously, after our stillbirth we contacted UCSF, Stanford, and the Mayo Clinic and the receptionist on the phone that we spoke with did not know what kind of doctor we should see. Reproductive endocrinologists deal with infertility, and MFMs typically deal with diagnosed problems during a pregnancy. One of the nurses even told us that we 'needed to have a diagnosis' before we could see a particular MFM. I asked if he could run the diagnostic tests, and she simply said 'he doesn't do diagnosis'. So then what do they do? We called the REs and they told us they don't deal with late pregnancy loss. Studies on sudden infant death and pregnancy loss are actually few and far between compared to studies on helping older women with poor egg quality conceive. Both the friend I talked about and my wife and I are in our early 20s. The last 'breakthrough' with regard to stillbirth and late miscarriage was made in the 80s with the discovery of anti-phospholipid syndrome, but there has been no new conditions or treatments in the past 40 years. Most of this is due to a lack of research and funding, in comparison to infertility, which for some reason is incredibly well-funded. I'm just saying we should question if we're actually spending our resources equitably.
  - arkades 9y ago
    > There is no medical specialty dedicated to anyone who loses an infant or pregnancy There is. They’re medical geneticists. They’ve got relatively large departments at NYU, Brigham and Women’s, and NYP-Cornell. It’s not under-funded, it just usually goes under the radar as “genetics,” rather than a clinical specialty.
    - tathougies 9y ago
      Why would genetics have anything to do with it? If a baby is genetically abnormal, then it's not a surprise that they died (although still sad!). All the babies I mentioned were genetically normal. Their hearts just stopped. We've seen the geneticists; they cannot explain why any of our children died, because none of it was genetic (believe us.. carrier screening was on the top of all of our lists to make sure it wasn't something we're passing on). Moreover, almost every study into the matter shows that the more pregnancy losses a couple has had, the less likely it is that any of them were due to aneuploidy, so again, genetics (while important for single miscarriages or stillbirchs) is an unlikely explanation for recurrent losses, unless a parent carries a balanced reciprocal or robertstonian translocation (which none of us do). The MFMs that we have spoken with have all suggested various blood issues and some auto-immune issues which we are now being tested for. I don't see how geneticists (who are usually not doctors themselves) could possibly have the level of expertise to handle these cases.
      - arkades 9y ago
        Carrier testing is for known diseases only. For unknown genetic traits which give rise to non-viable offspring, well... they’re unknown. I’m sorry I wasn’t clear - I meant Medical Geneticists (MDs) not geneticists (phds). That said, their work on these issues tends to be oriented to the basic science side, so that it can be applied as screenings and other genetic tests for couples in the future. Most Medical Geneticists are part-clinical and part-bench scientists; I don’t know of any that are purely clinicians. Their clinical side tends to be pre-conception screenings and genetic counseling. It seems like what you’re saying you want is a medical specialty that deals in particular with individual couples that keep losing children, as though it’s a clinical problem. Admittedly, there are some exceptions (eg, anti-phospholipid syndrome), but that already has a relevant specialist: OBs are supposed to identify that a patient may have it, and the relevant specialist (rheumatologist, usually, for the autoimmune stuff) confirms and treats.
dominotw 9y ago
We have already figured it out how to make babies not die. Have babies when you are young.
- tathougies 9y ago
  We started at 21, and we're 25 now? Any younger and we would have been teenage parents. Our friend couples are similar ages, so age is not a factor for us at least. At one point, a doctor suggested that my sperm could by a contributory factor as men's sperm doesn't fully mature until age 25. Honestly, doctors are better at helping older women, than younger ones. One of the couples I know, the woman had her first miscarriage at 16. Believe it or not, young people can lose babies too.... But thanks for the useless suggestion!
  - tlear 9y ago
    Statistically he is correct. The "good" part it is common to have a miscarriage and then multiple healthy children. Unfortunately people do not talk enough about miscarriage and many hide them, creating impression that it is not a common thing. I am sorry it happened to you.
    - tathougies 9y ago
      One or two miscarriages is fairly typical. Three is about 1% of couples. We've had six miscarriages altogether along with the stillbirth, which is not common. Six puts you in the 1% of the 1%, which is the 0.01% and the stillbirth puts you in the 0.2% of that which is 0.002%. Also, no matter how you slice or dice it, my friend's five full-term stillbirths are not common, and his perception that it's not common is not due to people not talking about it. Statistically, his experience is one in a million, and there is no slicing or dicing it. Saying it's common dismisses the very real condition that's causing their stillbirths. Moreover, we've been to three specialists, and we've explained the circumstances of our stillbirth (baby's heart stopped overnight). All three have told us this is quite rare, and the most common presentation is slow fetal demise preceded by obvious growth delay. Ultimately, not all miscarriage is created equal, and the lack of distinction between different types is probably one of the things holding back research in this area. This isn't just my thinking several research papers have been published recently which make the exact same point. I'm not denying the importance of not waiting til you're 40 to try. However, his comment that the children of young parents do not die is not true.
chrisweekly 9y ago
I'm so sorry for your loss. You're not alone.
lugg 9y ago
https://report.nih.gov/categorical_spending.aspx https://report.nih.gov/categorical_spending.aspx 2016 numbers because recent ones make me cry. Infertility: 86m Birth /infant health: 240m SIDS: 16m Not sure I see the misallocation.
- tathougies 9y ago
  This study wasn't NIH funded?

dgritsko 9y ago

Just wanted to say that I'm sorry for your loss.

gph 9y ago

>so forgive me if we're still not that impressed by medicine. I get you're venting some pain here, but that's kind of looking a gift horse in the mouth. Modern medicine hasn't figured out every single mystery, but it's certainly impressive what we have figured out.

tathougies 9y ago
There is no medical specialty dedicated to anyone who loses an infant or pregnancy, but there is a whole industry dedicated to creating new embryos and conceiving. Seriously, after our stillbirth we contacted UCSF, Stanford, and the Mayo Clinic and the receptionist on the phone that we spoke with did not know what kind of doctor we should see. Reproductive endocrinologists deal with infertility, and MFMs typically deal with diagnosed problems during a pregnancy. One of the nurses even told us that we 'needed to have a diagnosis' before we could see a particular MFM. I asked if he could run the diagnostic tests, and she simply said 'he doesn't do diagnosis'. So then what do they do? We called the REs and they told us they don't deal with late pregnancy loss. Studies on sudden infant death and pregnancy loss are actually few and far between compared to studies on helping older women with poor egg quality conceive. Both the friend I talked about and my wife and I are in our early 20s. The last 'breakthrough' with regard to stillbirth and late miscarriage was made in the 80s with the discovery of anti-phospholipid syndrome, but there has been no new conditions or treatments in the past 40 years. Most of this is due to a lack of research and funding, in comparison to infertility, which for some reason is incredibly well-funded. I'm just saying we should question if we're actually spending our resources equitably.
- arkades 9y ago
  > There is no medical specialty dedicated to anyone who loses an infant or pregnancy There is. They’re medical geneticists. They’ve got relatively large departments at NYU, Brigham and Women’s, and NYP-Cornell. It’s not under-funded, it just usually goes under the radar as “genetics,” rather than a clinical specialty.
  - tathougies 9y ago
    Why would genetics have anything to do with it? If a baby is genetically abnormal, then it's not a surprise that they died (although still sad!). All the babies I mentioned were genetically normal. Their hearts just stopped. We've seen the geneticists; they cannot explain why any of our children died, because none of it was genetic (believe us.. carrier screening was on the top of all of our lists to make sure it wasn't something we're passing on). Moreover, almost every study into the matter shows that the more pregnancy losses a couple has had, the less likely it is that any of them were due to aneuploidy, so again, genetics (while important for single miscarriages or stillbirchs) is an unlikely explanation for recurrent losses, unless a parent carries a balanced reciprocal or robertstonian translocation (which none of us do). The MFMs that we have spoken with have all suggested various blood issues and some auto-immune issues which we are now being tested for. I don't see how geneticists (who are usually not doctors themselves) could possibly have the level of expertise to handle these cases.
    - arkades 9y ago
      Carrier testing is for known diseases only. For unknown genetic traits which give rise to non-viable offspring, well... they’re unknown. I’m sorry I wasn’t clear - I meant Medical Geneticists (MDs) not geneticists (phds). That said, their work on these issues tends to be oriented to the basic science side, so that it can be applied as screenings and other genetic tests for couples in the future. Most Medical Geneticists are part-clinical and part-bench scientists; I don’t know of any that are purely clinicians. Their clinical side tends to be pre-conception screenings and genetic counseling. It seems like what you’re saying you want is a medical specialty that deals in particular with individual couples that keep losing children, as though it’s a clinical problem. Admittedly, there are some exceptions (eg, anti-phospholipid syndrome), but that already has a relevant specialist: OBs are supposed to identify that a patient may have it, and the relevant specialist (rheumatologist, usually, for the autoimmune stuff) confirms and treats.

dominotw 9y ago

We have already figured it out how to make babies not die. Have babies when you are young.

tathougies 9y ago
We started at 21, and we're 25 now? Any younger and we would have been teenage parents. Our friend couples are similar ages, so age is not a factor for us at least. At one point, a doctor suggested that my sperm could by a contributory factor as men's sperm doesn't fully mature until age 25. Honestly, doctors are better at helping older women, than younger ones. One of the couples I know, the woman had her first miscarriage at 16. Believe it or not, young people can lose babies too.... But thanks for the useless suggestion!
- tlear 9y ago
  Statistically he is correct. The "good" part it is common to have a miscarriage and then multiple healthy children. Unfortunately people do not talk enough about miscarriage and many hide them, creating impression that it is not a common thing. I am sorry it happened to you.
  - tathougies 9y ago
    One or two miscarriages is fairly typical. Three is about 1% of couples. We've had six miscarriages altogether along with the stillbirth, which is not common. Six puts you in the 1% of the 1%, which is the 0.01% and the stillbirth puts you in the 0.2% of that which is 0.002%. Also, no matter how you slice or dice it, my friend's five full-term stillbirths are not common, and his perception that it's not common is not due to people not talking about it. Statistically, his experience is one in a million, and there is no slicing or dicing it. Saying it's common dismisses the very real condition that's causing their stillbirths. Moreover, we've been to three specialists, and we've explained the circumstances of our stillbirth (baby's heart stopped overnight). All three have told us this is quite rare, and the most common presentation is slow fetal demise preceded by obvious growth delay. Ultimately, not all miscarriage is created equal, and the lack of distinction between different types is probably one of the things holding back research in this area. This isn't just my thinking several research papers have been published recently which make the exact same point. I'm not denying the importance of not waiting til you're 40 to try. However, his comment that the children of young parents do not die is not true.

chrisweekly 9y ago

I'm so sorry for your loss. You're not alone.

lugg 9y ago

https://report.nih.gov/categorical_spending.aspx https://report.nih.gov/categorical_spending.aspx 2016 numbers because recent ones make me cry. Infertility: 86m Birth /infant health: 240m SIDS: 16m Not sure I see the misallocation.

tathougies 9y ago
This study wasn't NIH funded?