Future pregnancies after losing baby to Congenital Diaphragmatic hernia

[Larmond387]

Hello All,
It has always been my wish to be surrounded by my children. I have a healthy and very busy nearly three year old daughter who keeps me on my toes.
Recently I lost my second little girl at 36 weeks after she was diagnosed with a Congenital Diaphragmatic hernia (CDH) very late on in pregnancy.
I am looking for some positive stories regarding anyone that has had healthy children after having a CDH baby. As you can probably imagine I am absolutely terrified of the thought, but still long to make my family bigger as I have so much love to share along with feeling the need to give my daughter a sibling. Did anyone have extra support throughout their pregnancy extra scans, tests etc?.
I would appreciate some feedback, and would love to hear your stories so I don’t feel like I’m in this alone. X

Hi @Larmond387, I haven’t had a similar experience but I didn’t want to read and run. I am so very sorry for your loss, I cannot even imagine what it feels like to lose a baby that far on in pregnancy . I hope your looking after yourself and giving yourself the tlc you need, I know it’s hard with a toddler! Hopefully somebody will be along with some positive stories for you soon xx

I’m very sorry for your loss.
Again no personal experience but wanted to say that a chat with your GP might be a good place to start - hopefully you have a good one who will be able to support you through the next little while? They may be able to refer you back for discussion with a fetal medicine team (or seek out extra info for you) so that you know what the plan would be next time. It depends a little bit exactly what your story was last time (eg whether there was thought to be any genetic component) but usually the recurrence risk is very low. At the very least you should be offered a detailed anatomy scan at 20 weeks by a skilled team, but hopefully your local service could do. Little more monitoring as well.
Also - if it was quite recent and you are still in touch with your fetal medicine service or obstetrician, perhaps you can contact them to discuss a plan for next time?
X

Thank you so much both for your reply. I have an appointment with Fetal medicine soon. I was just hoping for some other stories similar to myself. I appreciate your words.

I am so sorry that you lost your little girl so late in in your pregnancy, its so very sad.
I didn't have the same issue, but rather a chromosomal issue and I was so scared that there would be something wrong with my baby. After an early miscarriage I became pregnant again and now I have a healthy 3 month old.

Have you had an appt with a genetic counsellor? They don't really tell you that much, but I found my appt reassuring. Given there's no known cause of CDH it could be just bad luck and with very little risk of it happening again? A genetic counsellor would be able to tell you that.

Thank you very much for your message. We are yet to find out if there was a chromosome issue with my little girl, it is possible that it was only a physical issue. We are waiting to se Fetal medicine to discuss Emmie’s ill health and also future pregnancies. Other than that the only person I have had contact with is my midwife and bereavement midwife for emotional support. I am obviously hoping that this was a one off with my daughter, as my first little girl had no health issues other than being on the small side, but I know that there are plenty of baby’s born small and have no issues. I was not a big baby myself and my family are known for having little babies. Would Fetal medicine put me in touch with a genetic counsellor?.

@Larmond387 I believe that accessing a genetic counsellor is pretty much par for the course when these awful things happen. Maybe you will see a genetic counsellor at your appt. They just go through with you chances of it happening and chances of it happening again sort of thing. Maybe because of the coronavirus there might be problems accessing them. But deffo ask at your fetal medicine appt.

Hi - yes fetal medicine work very closely with genetics. A lot of the counselling can also be done by the fetal medicine specialists themselves, so it’s good you have your follow up with them. They will definitely put you in touch with the genetic service if anything is found on genetic testing for Emmie. Again so sorry for your loss.

Thank you all. I guess its just a waiting game to see if its a good idea if I try for another baby in the future. Thanks again

Hello,
did you have another baby? How did that pregnancy go?
ive just lost my daughter to cdh