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Thread: CDH survivor born in 1990 looking into starting a family. Worry of any complications

  1. #1

    CDH survivor born in 1990 looking into starting a family. Worry of any complications

    My husband and I are thinking of starting a family but both are concerned that the pressures of being pregnant might cause complications for me. I’m 5 feet tall and pregnancy already makes me nervous. I haven’t had complications since I was born and had a surgery to fix my hernia(besides acid reflux).
    I just want to know what others went through and what I should and shouldn’t worry about.

  2. #2
    Hello I just got on this site and noticed your post. I'm a CDH survivor 1984. I have 3 kids and non of them were born with CDH. my doc's did watch me closely. All I can tell you is to hope and if you pray do for the best. I wish you and your family to be the best.

  3. #3
    Hi there. I haven't been on this site in a very long time and I posed a similar question a few years ago. I am happy to report I was able to get pregnant, grow, and deliver a healthy baby boy. He is 3 years old now and the light of my life! I was followed very closely by my obstetrician, but I was lucky and did not need to be followed by any high risk doctors. After my 20 week scan, they were able to tell me my son's anatomy was all normal. Starting at 28 weeks, they did serial growth scans to be sure he continued to grow at the expected rate. Pregnancy is very nerve-wracking and I didn't go through without any anxiety, but my pregnancy was very uncomplicated. I echo the sentiment above - it's all in the hands of someone or something larger than us. It's hard to tell you what you should or should not worry about, as everyone's experience is different. Having CDH just puts us in a different category. Good luck! Please let me know if you have any specific questions!!

  4. #4
    Hi there!!! Born in 1981 with CDH, had a reoccurring diaphragmatic hernia in 1989. Two repairs and two babies later and I didn’t have any complications!! I wasn’t even monitored more closely than the average patient. I delivered both babies after 35 years of age, and at 41 weeks as well. Good luck to you!!
    Last edited by KathyRendon; 02-18-2020 at 02:52 PM.

  5. #5
    Hi, sorry for the late reply. I haven't been on here for a long time.

    I was born with L-CDH in 1965. Like you, I only had the surgery to fix my hernia.

    I am 5 feet 2 and when I got pregnant in 1994, my belly got big fast! When I was about 4 months pregnant someone asked me:"How long before you have to give birth?" That says enough, I think.

    My body had a hard time being pregnant. My liver was unable to process both my "waste" and that of the foetus. Because of this I developed 2 skin conditions, after the first trimester. They itched like crazy, 24/7. I wish my family doctor had referred me to a dermatologist, perhaps they would have prescribed me medication more suited to my situation. The ones I did get helped marginally.

    I had the same care as a non-CDH mom. I was one of the first women with CDH in The Netherlands to get pregnant, much less was known about risks it may involve. I would definitely advise to get more help from an obstetrician, just in case.

    My placenta was placed in front of the birth canal, and it was blocked because of it. This was why I had to deliver trough a C-section. it has nothing to do with CDH whatsoever. It is a chance thing, because of where the placenta attaches itself.
    I would say that acid reflux was a mild issue from about halfway through my pregnancy.

    Our son was born healthy, which was a huge relief. In those days, there was no 20-week ultrasound, so it was pretty much a guessing game until he was born.

    I know from other moms with CDH, that some were able to deliver the natural way. One had a surgical team on standby, just in case (she had bilateral CDH). She had 2 children and the surgical team was not needed in both cases.
    I also know that other mothers were advised to deliver through C-section, because delivering the natural way might put too much of a strain on their diaphragm.

    I would definitely advise delivering in the hospital. No one will be able to predict how your diaphragm will do when you deliver the natural way. Good luck!
    I was born in The Netherlands in 1965 with LCDH. I was 8 weeks premature, had experimental surgery when I was 3 days old. I had very little chance of survival, but here I am. I am a Master of Business Economics, married my high-school sweetheart and we have a son (born in 1994, no CDH). It was 2004 when I found out there were others like me out there. CDH will always affect my life. In 2016 I was diagnosed with and treated for breast cancer. The lasting affects of this treatment enhance those of CDH.

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