Congenital Diaphragmatic Hernia

amtay825

Anyone here have experience with CDH? My son was diagnosed with this at the 16 week ultrasound, and we'll have a long road ahead of us when he's born. There is such a broad spectrum of the severity of these cases, there's no way to know until after he's born just how bad it is. It could cause lots of developmental issues; or none at all; just depends on how he does in the beginning and his recovery time.

rebecca1198

Yes! My baby girl was diagnosed with a moderate/severe left CDH (LHR 1.2, liver up) at our anatomy scan in December. She was born in May and her repair was 5 days after she was born. She unfortunately reherniated 3 weeks later, but has been doing wonderfully since then. She never needed ECMO, and went home without a feeding tube or home care (in fact, she's nursing like a champ). Feel free to pm me with questions! I know how hard and scary this is. Not knowing anything about what to expect for him is incredibly frustrating. Lots of hugs.

amtay825

Thank you for your reply SO glad to hear she's doing so well! We're obviously praying for the same outcome. Its just so hard; the not knowing part, the waiting game.

rebecca1198

Tell me about it. It's the hardest part of this entire ordeal and is incredibly stressful. I hope you don't mind but I stalked Brody's FB page and your story sounds so much like ours. The doctors still gave us a 60% chance of survival given how large her defect was based on her fetal MRI, so I'm so glad to hear that you have much better odds than we did. Fingers crossed that your amnio comes back clear when you get it!

amtay825

Not a problem at all! The page is for anyone who would like to keep up with our journey, its mostly friends and family but lots of ladies from here have joined simply because that's where I post updates so I don't have to do it multiple places. So, at what gestation did you have the MRI? The neonatologist said its not necessary at this point, since it has been confirmed with the first MRI. However, with that one he was still so small and moving everywhere that they weren't able to tell how bad it is. I was wanting to get another one around 32-34 weeks to see what to expect. He said that the most important thing is that my doctor get LHR's every visit and we'll monitor those throughout the rest of the PG and that will tell him (neonatologist) what to expect at delivery.

I'm also leaning more towards no amnio at this point. Everything else is looking so good; I kinda don't see the point of going through another procedure. We'll see though. Did you end up getting one?

rebecca1198

I got a fetal MRI, comprehensive ultrasound, and echo at 21w5d. After that, I had bi-weekly ultrasounds to monitor growth/LHR and fluid levels until 34w, then weekly BPPs after that. I didn't get an MRI after that point, just relied on the ultrasounds (which, as we found out after she was born, turned out to be a more accurate prognostic predictor than the MRI!).

I did get an amnio at 25w. The incidence of comorbid genetic disorders is fairly high, so even though the genetic screening at 13w didn't show anything, I felt better knowing as much information as possible ahead of delivery so that we could plan for all outcomes. I swear it wasn't a huge deal. Took all of 10 minutes and the longest part was waiting for the area to be sterilized. Plus, in light of all of the bad news we had gotten, the fact that it was an isolated/non-genetic defect was something positive, which was good for my mental health.

There are two other things I will tell you: first, your baby will be unlike any other CDH baby so it is very hard to predict what will happen. There are so many variables to this condition because it can affect so many organ systems. In addition, the sample size for most of the published literature is incredibly small and high-quality, controlled studies are rare, so it will be hard to use statistics to give you a true idea of prognosis. Keep relying on what you know about Brody now instead of what's expected to happen, and know that you'll soon have answers (only 18 more weeks for you!). Second, the CDH path is long and stressful. The time you'll spend in the NICU will sometimes be one step forward, ten steps back. But it does end, and it does get better. Take the time now to put support measures in place and make sure your marriage is "NICU-proof." My hospital offered a psychologist for free not only for me, but for my husband (and us together) and for my family. I'd highly recommend talking to someone throughout your pregnancy, even if this isn't something your hospital automatically offers.

(That was really long, I'm sorry!)

amtay825

Thanks again so very much for sharing your advice and words of wisdom! I already see a specialist due to my health during pregnancy, so I'm already being monitored twice a week. I'm going to ask him on Wednesday about the BPPs if that's in the plans or what. Thanks again; I GREATLY appreciate your help!