Concerned and Questions

Hi, I was born with CDH (left side) and had surgery within the first few days of being born. When I was around 3 years old I had a bowel obstruction resulting in me needing another surgery. I have had no issues since and I am now 24 years old. I have been with my boyfriend for 8 years now and we are hoping to start a family within the next few years.

I was hoping any other adult CDH survivors who have gone through pregnancy could give any indications of what to be concerned about or what I should be asking my doctor? Could anyone give any information of their experiences with pregnancy as a CDH survivor? I am concerned about scar tissue, adhesions, diaphragm, lung capacity or possibility of passing on CDH.

Hi SaraLirette,

Sorry for the late reply, I log on infrequently (most questions are posted in the Facebook Groups).

I was born with L-CDH in 1965. I had the repair surgery and was lucky that this was the only surgery I needed.

When my (then) boyfriend and I were thinking about getting pregnant, about your age, much less was known. I went to have an X-ray from my diaphragm, because the last one was made when I was 12 years old. Si it was 1990, and the restults of the X-ray were that my diaphragm looked perfect.

Right.... they did see that the right side of my diaphragm was higher than the left side, but didn't feel the need to examine any further. It was 2013 when, on my request, a pulmonologist ordered more tests and found out that my liver is protruding 2 inches into my ches! I lack 20% lung volume because of it. The diaphragm is closed, but the spot where the liver comes through is just soft tissue and with very few muscle tissue. I would never have been able to give birth the natural way, my diaphragm lacks "pushing power".

So get that checked out, is my advise.

I got pregnant in 1994, fairly easy. Was very tired during the first trimester, but not much morning sickness (very happy with that). I was basically treated like a regular pregnant woman. Which I now know, was wrong. You're not a regular woman. Because of CDH and your bowel obstruction, you need to be monitored more carefully.

My liver was unable to process the "waste" produced by my own body and that of the foetus. From the second trimester I developed 2 skin conditions that itched like craze, 24/7. These days dermatologists have more knowledge of which medication to use in these situations. Back then medication helped take a little of the itch away, but itching for more than 5 months, 24/7 is exhausting. To this day, I'm not sure if this is CDH related. We are all different and I now know that my body is very different from the average non-CDH person. The exceptional is normal for me.

Also, it turned out that my placenta had placed itself in front of the birth canal. It was partially blocked and I needed a C-section to deliver my son. This has nothing to do with CDH, it happens in 2% of the pregnancies.

As to the possibility of passing on CDH: get an appointment with a clinic geneticist, preferably one attached to a hospital that treats children with CDH. Or look into the DHREAMS study. They can help you with more information and testing, so yo will know if your CDH is a known genetic variation that is likely to be passed on.

Good luck!