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.
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.
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.
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.
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.
Nevertheless, I think your focus on medical genetics is quite misguided. For example, we know several causes of recurrent stillbirth and infant death that are not genetic in nature. For example, NAIT certainly has a genetic predisposition, but the primary treatment is immune and hematologic in nature. There's no reason this would fall under a geneticists area of expertise, and given the rarity, it's not clear most OBs would know about it either. Several couples I've met in online support groups have had a lot of trouble finding a doctor knowledgeable enough in NAIT to properly treat their pregnancies (which are actually remarkably successful, when treatde). Given the importance that we ought to be giving to lives of young children, it seems that simply lumping known non-genetic causes with genetics is the wrong approach. A better approach -- in my admittedly biased opinion -- would be to have one specialty with a wide breadth of knowledge who could specialize in teasing out what may be causing any particular issue.
For example, it seems somewhat ludicrous to believe that a woman who loses several babies consecutively in the third trimester due to premature labor while the baby is still alive is being affected by the same pathology that causes another woman's babies' hearts to just keep stopping. Unfortunately, these distinctions are rarely made in studies.
And while OBs are the ones on the front-line of treatment, they're also mainly a surgical / low-risk specialty. There does need to be some specialized care for the higher-risk couples. Multiple studies in other countries (we're in America) have shown that simple supportive care (including heavy monitoring, constant reassurance, and dedicated clinics) increases the live birth rate in couples with recurrent stillbirth or other forms of pregnancy loss.
We live in the bay area, we have managed to make appointments with several specialized doctors, including the department chair of obstetrics and gynecology at one of the large academic hospitals here (after much consternation with the nurses on the phone). They have told us that they do not know. She also told us that she's never really seen too many cases of sudden cardiac arrest in mid-pregnancy fetuses. She did not send us to anyone else -- believe me, my wife and I would hop on the opportunity to find another doctor with relevant experience.
I’m gonna leave it at this: if you’re willing to take a trip, NYU has a dedicated repeat pregnancy loss center (Phone: 212-263-6359).
(And for what ever a strangers internet words are worth: I do earnestly hope that they or someone else succeeds in helping you.)
(I want to echo the good vibes here, too.)
Perhaps I haven't made my complaint clear. The doctors exist, but they aren't helpful.
We don't expect miracle answers, and realize medicine may not know, but it would be nice to have a dedicated clinic to work with you through it, or at least a doctor willing to establish a long-term relationship. I expect it would also help researchers formulate new hypotheses if they kept in contact with couples who are 'unexplained'.
We have been to three recurrent loss clinics at UCSF, Stanford, and the Mayo Clinic. There are doctors there who do research in this area, but if you don't have any of the limited number of conditions that they know about, they aren't helpful, nor are they willing to help you find clinical trials that may apply or willing to explore research with you or stick with you. I've read many brochures and websites that claim that the doctors will work with you to determine the cause of miscarriage, stillbirth, etc, but in our experience they work with you until they give up, then they don't want to see you anymore.
This is a bit different than other specialties. I don't have much experience with doctors, but I do have some older family members with chronic illnesses, a few with rare, unexplainable ones. In that situation, it's common for doctors to establish long-term relationships with patients and suggest clinical trials or research opportunities they can participate in. The approach seems different than what we've seen.
Once we're done with our next round of appointments, perhaps I'll call NYU. We have a few more appointments coming up with some more research doctors; hopefully, they will be more willing to keep track of our case.
I think part of the problem is that there's likely a large amount of problems that lead to stillbirths and SIDS, so it's hard for researching to get funding to study a very general problem. Most the time they need to have a clear purpose and idea of what it is they are trying to figure out. And in the case of IVF/embryos there has been a much clearer path for them to take.
Not saying that's right, but it's often how it goes in science in general. If you're got something specific where a study will likely lead to meaningful and actionable results you're both more likely to get funded and more likely to have collaborators, etc.
Yeah, I totally agree that the magnitude of the problem is certainly part of the issue, and that IVF offers an easy path forward for those who can't conceive. Still it's depressing when you conceive easily, lose the baby, and the doctors have no clue (a few of my friend's stillbirths have been birth control failures, so they weren't even trying).
If the money was in "preventing infant deaths" then physicians would specialize in it. But when you have a huge supply of people willing to spend hundreds of thousands on fertility, lots of docs will respond to the market.
I get your point, it would be nice. It would also be nice if everyone working at facebook and snapchat would work on making our healthcare system more efficient. But money talks...
But this is exactly what an MFM (maternal fetal medicine specialist) does. I'm not sure that the one MFM you tried to consult with is indicative of the whole of the field.