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Pregnancy

So so scared. Congenital diaphragmatic hernia (CDH)

29 replies

Sn00p4d · 24/01/2015 14:12

I've made it to 36 weeks of healthy pregnancy only to find out yesterday at a routine growth scan that my beautiful baby has CDH.
Her diaphragm hasn't formed properly so organs that should be in the abdomen have floated away into the chest cavity meaning her lungs haven't had enough room to develop.
The survival rate is 50/50.
I'm devastated. I can't believe this is happening to her and to us, even if she survives this and the open surgery in her first few days of life to correct it she's going to have so many problems as a result of this.
I can't relate the baby kicking lumps out my insides to this poor wee soul on paper.
I won't get to see her or hold her before she's intubated and whisked off to NICU.
Can't believe it.
Please someone tell me there's hope.

OP posts:

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theclick · 18/02/2017 12:12

My nephew had this. He is now 9 years old and yes while he still has hospital visits, he is perfect, loves life, school, plays a lot etc. Fingers crossed your bub will be the same xx

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theclick · 18/02/2017 12:12

*has this I should say

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fkdfjdklfjkdfjopsd · 13/09/2018 12:33

Im very sorry to hear about this.
HOWEVER, I CAN TELL YOU THERE IS HOPE!!!

i am a 33 year old male with CDH... This was not seen on any ultrasounds. in fact, this was discovered purely by accident whilst they were removing my gallbladder.

This is a rare and worrying condition. But i survived 30 years with it (it was found on my 30th birthday). There are, to my knowledge, 2 types of CDH. I have the WIDE NECK Hernia. Which tends to be less troublesome.

i cannot tell you that everything will be alright when she is born. i am not a doctor, surgeon or midwife. BUT, i can tell you, that it MAY NOT necessarily impact her life to the point where she will need care for the rest of her life. It may just impact her ability to do sports.

i have no REAL lung issues. I have had Asthma since i was a child and my lungs have been able to grow perfectly.

Please try to relax, have a safe birth, and let the doctors do what they can.

There is hope. You're talking to someone who in all probability has beaten the odds of winning the lottery 10 times in a row. XX

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MollyM30 · 16/09/2018 01:09

Hi, my son was diagnosed with CDH when he was born...It wasnt picked up in any of the scans so it was a huge shock. The initial prognosis was very poor....However he had surgery less than 48 hours after birth. There was initially some complications and I was told rather bluntly that my son would be lucky to be out of hsopital before Christmas (he was born in middle of October). He was out of hospital before Halloween and has had no complications except one blockage of his bowel when he was 6 months old which was resolved with surgery. He's now 10 and absolutely thriving. If you need any information/support please feel free to message me. Its so scary but most babies have a very good prognosis nowadays