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diaphragmatic hernia?

sandsandmoresandsandmore member
in High-Risk Pregnancy
I'm possibly headed towards this diagnosis tomorrow. Does anyone here have any experience?
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Re: diaphragmatic hernia?

  • Newport2011BMNewport2011BM member
    My first child had undiagnosed CDH that we discovered 24 hours after he was born. I had plenty of ultrasounds because he was breech but because his organs did not migrate into chest cavity until after birth the hole in diaphragm was not seen and we did not have level 2 ultrasound. My son was unable to breath and coded 24 hours after birth and then spent 6 days in NICU and then had surgery (CDH repair). His recovery was amazing and he actually left the hospital 6 days after surgery and has been healthy ever since. However I will say that his case is the exception and not the norm. The extent and problems and prognosis all depends on in utero lung development. Are you near a major hospital? Only certain hospitals are equipped with the technology needed like ECHMO which is used in most CDH cases to help babies survive until stable for surgery. If you do get the diagnosis then I highly recommend doing your research on where is best to deliver. There has been some in utero repairs but I do not know whether the research says that outcomes are better than waiting until birth or not. Can I ask why you said "I am possibly headed to this diagnosis tomorrow?" We have our Level 2 ultrasound next Tuesday to look for any problems with this little one due to our son's CDH.  
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  • sandsandmoresandsandmore member
    Thank you for the response. I had my 19w u/s two weeks ago and they couldn't get clear pics of the heart. I returned on Tuesday and that's when CDH was first brought up. I went sent today to a fetal echo to get a better look.

    Confirmed that there's 'something' in the lower right lung area, whether it's a cyst in teh lungs or the intestines, we don't know. At this point, we have to assume it's CDH.

    Are there any specific questions I should ask the doctors to help prepare for this? Thank you!
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  • Newport2011BMNewport2011BM member

    I assume your 19 week ultrsound was a normal ultrsound. I would ask them if they have now confirmed what is in the lung area? If not they should be able to with a level 2 ultrasound. How many/which organs are located in the chest cavity and how developed is the right lung vs. the left? What state are you in? Does your hospital have ECHMO? There are 4-5 top hospitals for treating CDH. I also highly recommend looking up the non profit called CHERUBS, which is a CDH organization that has great support for both families pregnant/expecting CDH babies and families of "cherubs" which is what they call those diagnosed with CDH. I will keep you in my thoughts and prayers and please feel free to ask more if you want as you learn more.  

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  • Newport2011BMNewport2011BM member
    Thinking of you...any updates?
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  • singinchick31singinchick31 member
    I'm going through this process right now as well. Confirmed CDH around 26 weeks, on the left side, his stomach is up in his chest cavity and caused his heart to move slightly to the right, taking up more of the space his lungs should fill. It was very frustrating to get this diagnosis after being told everything looked good at the anatomy scan at 18 weeks. We had an echo at 19 weeks at which point they told us there could be a hole in his heart (VSD) and the stomach looked slightly higher than normal. They said they would follow up in a few weeks and scan again. Five weeks went by and I heard nothing so I called myself to request another ultrasound. It was the same doctor who did the anatomy scan at 18 weeks and said everything was fine...he went on to confirm the hernia and transfer my care to a team of MFM specialists at the best equipped facility in the city, right next door to best children's hospital in the province. They performed another echo and could no longer see a sign of VSD. Fast forward to today, I'm 34w4d and LO is developing very well, measuring 5lbs 12oz with a lung to head ratio of 2.6. Based on biweekly ultrasounds they believe the severity of the hernia is mild to moderate and have given him a fairly good prognosis. Nonetheless, he will be on ventilation immediately and we will only see him for a minute before they take him to the NICU at the children's hospital. They will monitor his condition for the first 24 hours and then determine his eligibility for surgery at that point. The surgery itself is very straight forward, the main worry is the maturity of his lungs and how strong they become in terms of breathing on their own without ventilation. This is something that cannot be determined by ultrasound or size. I wish you luck and positivity should this be your diagnosis as well, but it may be too early to tell definitively. Just make sure you receive the best care that you and your LO deserve and don't let it discourage you. T and P to both of you and stay strong!
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