PPCM and risk of the child

[wtsparkle]

Does anyone know if there is any info out there about women with PPCM and if there is a risk of problems (breathing, heart, etc) to the child? I am almost a year out of diagnosis and my son has been getting purple lips on occasion recently. A friend of mine who is a nurse mentioned that it could be a heart problem etc. and it can be inherited. I did have a neice who was born and died from complications with a hole in her heart. I called my dr. and they said it happens all the time to infants when they hold their breath (which he wasn't doing)

Thanks for any info.
Heather

[LovinLife]

I asked two different cardios this and they both said it doesn't hurt the child at all, but then from reading on here and on the internet I've read where women had their children die (when they were still pregnant with them) and a few soon after birth. I know for a fact when my daughter was due and when I had her they said she looked a little premature so I too was wondering if it could slow or harm development during the pregnancy. Unfortunately, I haven't found a clear answer. Another thing I heard was that sometimes women are diagnosed with PPCM and actually had an underlying heart condition that just presented bc of pregnancy. In that case I'm sure the condition could be heriditary and be passed. The only way to know is to have your child checked. And I would 100% do that. Better to be safe than sorry. Don't let them brush you off!

[JAMESFETT]

What is amazing to me is that infants born to mothers with PPCM (or mothers who develop PPCM following that pregnancy) are born healthy and ALMOST NEVER have dilated cardiomyopathy. I am thankful for that. Of course these babies need physical exam, heart auscultation, and investigation of any abnormalities, because something other than dilated cardiomyopathy (unless it is hereditary familial dilated cardiomyopathy) could occur, just like with babies born to women without PPCM.

JD

[LovinLife]

so you're saying that most PPCM babies are born healthy just like other babies? a couple of people (nurse friends etc) that they thought it may have stunted my daughters growth during the pregnancy. Is there any research on this or research on the babies in general?

[JAMESFETT]

Absolutely, most babies born to PPCM mothers are healthy. If the PPCM develops prior to delivery (one-third or less are, from reports around the world--and almost all diagnoses in South Africa and Haiti are made postpartum) there may be prematurity issues and hypoxemia issues, which can certainly affect the baby. But most women in the world who develop PPCM have a diagnosis post-delivery, and the baby is not exposed to abnormal environment in that siutation, unless there were delays in diagnosis (which could of course happen). It's a good question, and certainly one that merits more research. The reason more research does not occur is because it is a much less common condition in the areas of the world where there are more research funds, such as the USA, and therefore mostly, no one gets as interested in finding answers . Like many things, this is a situation where "the poor get poorer," But if PPCM ladies continue to insist to their physicians and political representatives that more research needs to be done, maybe more $$$ will be devoted.

JD

[LovinLife]

I think mine started a week or two before I had her bc I woke up with severe palps and couldn't breathe. I had to sit down in the aisle at the grocery store from being SOB, gained 6 lbs the last week, BP went up etc....and then when I had the baby I was 38 weeks pregnant, but they said she looked more like 36 weeks (by developmental things they check). So could that be due to lack of oxygen? She seems alert etc....but I just want to know if any perm. damage could've been done.

[SusanD]

so you're saying that most PPCM babies are born healthy just like other babies? a couple of people (nurse friends etc) that they thought it may have stunted my daughters growth during the pregnancy. Is there any research on this or research on the babies in general?

There are lots of congenital cardiac diseases that do not become apparent until kids are older. They are usually not ones that turn the kids lips blue, but a complete health history and thorough assessment for murmurs and perhaps an EKG might be in order if there are pertinent findings in the health history (such as poor growth curve, taking a long time to drink a bottle, sweating while drinking a bottle, history of squatting when they are active, etc.etc.).

[JAMESFETT]

Newborns are tough. From the sounds of things your baby will do just fine. Of course you will be following development, just as any concerned parent; but the evidence is overwhelmingly in favor of your and other PPCM babies doing very well indeed.

JD

[LovinLife]

Anybody else out there noticed anything with their PPCM babies?

[SusanD]

Anybody else out there noticed anything with their PPCM babies?


No, nothing so far. DD has had some cardiac concerns as an older school aged child. She has a flair for the dramatic and she gets a bit worried at the start of every new school year, so it was hard to tell what was causing her chest pain.......worries or SVT. She had one weird episode when we were just in the backyard playing and I KNOW I clocked her heart rate around 170. So, off to the Dr. we went. She wore a Holter monitor and nothing ever came of it. Hard to say. She has a benign murmur, but other than that and being a drama queen :rolleyes: , nothing is terribly wrong.

It is hard not to worry. I will still insist on a full echo before older sports participation and I will insist she have one before and during pregnancy. I don't care if I have to be the one to write the check for the echo either .

[tabs]

..and then when I had the baby I was 38 weeks pregnant, but they said she looked more like 36 weeks (by developmental things they check). So could that be due to lack of oxygen? She seems alert etc....but I just want to know if any perm. damage could've been done.

Unless you absolutely know the date of conception, it could easily be that she was born at 36 weeks instead of 38. I know that with my daughter, they changed the dates so many times that we thought that she was born at 37-38 weeks, but there was no way! She was definitely more like 35-36 weeks. She was preemie red with no fat, ears folded over, difficulty feeding, etc. She is now 8 and is perfectly healthy.

Twilah

[LovinLife]

I 100% know the date of conception.....so she was 38 weeks for sure! And the ultrasounds were always consistent with my date....with my son i was unsure, but with her we knew when it happened.

[pistons22girl]

My PPCM baby had a slight murmer when she was born. They did an echo though & she was fine, it went away. A lot of babies are born with them though. Her heart was good on the echo.

[sharron]

But most women in the world who develop PPCM have a diagnosis post-delivery, and the baby is not exposed to abnormal environment in that siutation, unless there were delays in diagnosis (which could of course happen).
We were pretty sure, in retrospect, that my PPCM developed at least two months before delivery, I had many symptoms, severe oedema, shortness of breath and high blood pressure. I was hospitalised twice and sent home as I did not have Preaclampsia!
PPCM wasn’t picked up until three days post delivery when I took a real turn for the worst!
Given what you said about most cases developing after delivery do you think I had developed/was developing PPCM at 7/8mths pregnant or did those ailments lead to the PPCM after delivery?

If I developed PPCM during pregnancy it didn’t effect my babies weight she was 9lb 7oz!!

[LovinLife]

Congratulations on the pregnancy!! How's that going? Do you know what you're having yet?

[JAMESFETT]

Certainly, you were developing PPCM prior to the birth of your child. In fact, on many of those diagnosed postpartum, one can often go back and realize that heart failure symptoms were developing before delivery. Hopefully, the message is getting out so that earlier diagnoses can be made because the earlier the diagnosis, the more cardiomyocytes (heart muscle cells) will be preserved for future function.

JD

[sharron]

Thank you Dr Fett, I just wanted to know when I started developing PPCM as I can then keep a close watch for it this time round. Although at the moment I’m inundated with appointments I don’t think anyone is going to let it slip through the net again!

Tish – Thank you, I’m nearly 13 weeks and all is well I’ve just had my first scan and saw our lovely bean:D But it was too early to tell the gender we hope to find out at the next scan. I’ve got loads of appointments coming up next week I see the obstetrician and the week after the cardiologist.
I find it amazing that each new midwife I see I have to fill them in on PPCM and what it is!!

[LovinLife]

well be sure to keep us updated on baby bean :) and yes, it is scary to have to keep updating all the medical professionals on PPCM. It seems like more of the everyday people that I talk to know more ab bc a relative has had it or a friend etc....

Anyway, so excited for you, I miss being pregnant already! Enjoy every minute of it!!!

[doloresmc]

My son was huge at birth (10.7lbs) and healthy..he had exczema and lactose intolerance..and now peanut allergies.