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33 Weeks, Congenital Diaphragmatic Hernia (CDH)?

Has anyone out there heard of this birth defect? Better yet, has anyone experienced it in their own pregnancy or know someone who has?

Briefly, it's a pretty common birth defect that effects (about) 1 in every 2500 babies. Around 7-8 weeks gestation the diaphragm develops but in this case it doesn't develop correctly leaving a hole that varies in size. Organs from the abdominal cavity move to the chest cavity. This means that the heart and lungs have to share growing room with the stomach, intestines, etc. The worst part of the defect is the compression the lungs face. About 20% of the babies born with CDH also face having a congenital heart defect. The cause of CDH is unknown.

That said, at about 29 weeks we found out our son will be born with CDH. It's on his left side (the most common), the stomach and intestines are crowding his heart and lungs. When we had our level I ultrasound, the tech couldn't get a clear picture of his heart. I didn't think TOO much about it since it sounds like this might be a pretty common thing..? At our level II sonogram another tech had the same exact excuse. She couldn't get a clear picture of his heart. (His heart rate varies between 120-160 every Dr. visit) Now they are sending us to see a cardiologist to take a closer look. Has this happened to anyone and it turned out to be nothing? I would love to hear feedback on either issue from ANYone who has gone through a similar situation or know someone who has!

 
mnd_lgh

Asked by mnd_lgh at 4:58 PM on Mar. 5, 2011 in Pregnancy

Level 1 (3 Credits)
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Answers (5)
  • hi, my son was diagnosed at 17 weeks with LCDH. We had an echocardiogram at 20 weeks that looked normal. We chose to continue the pregnancy and relocated to Philadelphia to be close to the childrens hospital of Philadelphia. Our case was worse than expected but we still chose to move forward. The Childrens Hopsital of Philadelphia is one of the best in the world for CDH and has its own Special Delivery Unit and Level 4 NIICU. Declan was born on 10/16/2010. They thought he would need ECMO but he managed to avoid it. We spent just over 3 months at CHOP. He had a Nissen done for his reflux and has a g-tube. Every day is a blessing and a challenge. He is the most beautiful happy baby. Not sure where you are planning to deliver but consider the Childrens Hospital of Philadelphia, no matter how far. They are really exceptional. Best of luck. If you ever need to talk just reply.
    laura672

    Answer by laura672 at 9:37 PM on May. 8, 2011

  • I've heard of the condition but haven't experienced it myself.  However, ten years ago when I had my twins they had a very hard time getting a good picture because my son had an abdominal wall defect, along with some other problems.   The doctors diagnosed  both babies with a left ventricle heart defect. I had to have additional tests and a fetal echocardiogram that ruled out the heart condition and they were fine.  


    Ultrasound can be very difficult when there are problems because for the picture to show up you need space, either air or fluid, to distinguish between separate structures. Ultrasound has changed a lot from when I had the twins but that was our experience. Good Luck to you and your DS.  I know DH and I went through a lot during my pregnancy, but 11 years later they are doing great.

    RyansMom001

    Answer by RyansMom001 at 5:20 PM on Mar. 5, 2011

  • no idea about the CDH... but my 3 year old has 3 CHD...
    asil

    Answer by asil at 12:51 AM on Mar. 6, 2011

  • My daughter was born with a LCDH. It is a very serious condition, but please don't give up on your child. The severity has a pretty large range. My daughter was one of the lucky ones and doesn't have a lot of the other conditions that come along with it. She was never on ECMO and never had a trach. She had severe reflux after her surgery and had to have a Nissen fundoplication done and she has a g-tube.
    There is a really good support group for CDH babies. Go to: http://www.cdhsupport.org/ and you can read about tons of stuff and get lots of advice from other parents.
    Find a good hospital to delivery at. I'm not sure where you are located, but try to be close to an actually Children's Hospital. Boston Children's Hospital, Children's Hospital of Philadelphia, and University of Michigan all do research in CDH and have good doctors there. We go to Nationwide Childen's Hospital in Columus Ohio. Riley's in Indianapolis is good
    dldelight

    Answer by dldelight at 12:47 PM on Mar. 8, 2011

  • Thank you so much to those of you that answered this question! I am JUST now reading it over 2 years later. Life got pretty hectic and I honestly had forgotten this account even existed!

    @Laura672 ... Your answer has seriously made my day... My son was born on April 14, 2011 and we named him Declan, too! :)) I would love to hear how your little Declan is doing - I see he's almost 3 years old! You said that everyday is a blessing and a challenge - I wish I could have read that 2 years ago! Thank you so much for the answer. :)
    mnd_lgh

    Comment by mnd_lgh (original poster) at 12:15 PM on Sep. 13, 2013

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