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CDH Survivor and Pregnancy

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I am a right-sided CDH survivor. My husband and I are attempting to start a family. This past December we had a miscarriage. We have had many doctors tell us we will be a high risk pregnancy with my health. I would love some advice or experiences if anyone would be willing to share as we are scared!

My doctors told me they think I will be in a lot of pain and discomfort the last 6 weeks of my pregnancy if I can get pregnant with all the scar tissue stretching with the baby. Anyone have any issues when carrying as a fellow CDH survivor?

Thank you.
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  1. jcrawford's Avatar
    my daughter is also a right sided survivor she is 26 now had her first child a healthy son on 11-1-2015 she had no issues she just didnt gain or grow much after 32 weeks
  2. Brooke Beecham's Avatar
    I am a survivor, 29, I have two babies and two angels. I had great pregnancies. However, I was High Risk, I only carried to 36 weeks. but they were healthy! I had preterm labor from 22 weeks with my son and 27 weeks with my daughter. So, I was on bedrest. My labor with them were long, I had an epidural with both. Epidural worked amazing with my son, but wore off with my daughter. It is challenging they did not want me having more kids because my body wasn't holding up after the pregnancies.

    This is just my experience though. It is crucial to listen to your doctors. They know you and your health. I was fortunate. Good luck! I would be happy to share my story more if you wish.
  3. ReneeS's Avatar
    Thank you so much for your stories! So glad to hear they were successful! We keep praying for a smooth pregnancy but I feel confident with all the high risk care that I will be watched very closely I just hope I am not in too much pain if I can get pregnant. I already had a miscarriage in December but the doctors didn't say it was due to anything specific I guess they are very common first few weeks! Hopefully next time I can go all the way!!
  4. Shirley Brouwer-Krab's Avatar
    Hi ReneeS,

    I was born with L-CDH in 1965. Our son is 22 years old.

    So little was known about getting pregnant as a CDH-survivor, that my pregnancy was treated as a normal pregnancy.

    I had an X-ray to determine the shape of my diaphragm before we tried to get pregnant. It was more or less shaped like a bow and didn't seem anything to be worried about.

    After the first trimester I developed a terrible skin condition, which itched like crazy 24/7. It seems that my body wasn't able to get rid of something called "liver salt". I couldn't get any medication because I was pregnant. I think a better treatment is possible these days, because more is known.

    I didn't have more discomfort than a healthy mother. I did have some reflux, but I'm not very tall, so that is what happens to more expectant mothers with my length.

    I ended up being hospitalised at 35 weeks, with placenta previa (placenta is placed in front of the birth canal) and had to deliver with a C-section at 37 weeks. This is not CDH-related.

    I know several survivors with children. Whether or not their pregnancies were treated as high risk seems to depend on their health prior to their pregnancy. Some were able to give birth the natural way, but they would have a surgical team on standby, just in case. Others had to have C-sections.

    Good luck!