Anyone here have a baby/child with CDH?

CateElizabeth

Just recently got diagnosed and am looking for more info (personal accounts).  Thanks!

luckyfrgg

*hug*  Sorry to hear you're dealing with that.  I don't personally have any experience, but a girl I knew in high school has a son who was born with it and is doing well now.  I believe he's 2 1/2, and I think she knows several other families who have had kids with CDH.  I can try to put you in touch if you PM me your email address.

KathW

Yes, My son was born with LCDH. He is 3 1/2 now. 

We did not find out until he was born. At birth he couldn't breathe and was taken to the NICU. He had an xray that showed the defect. His repair was at 2 days old, he has a patch now in place of where the diaphragm should be.

 After the surgery he was on the vent for about a month. NICU life is like a roller coaster. In the beginning he made slow progress but did well and after 6 weeks was able to come home. 

He still has eating challenges, and breathing issues, but overall is doing well. One thing I can tell you is that every CDH baby is different. Find a Dr/ Surgeon/ Hospital that is familiar with CDH and focus on taking care of your baby. 

I am happy to answer more questions, or talk more, my email is

Kathwalker174@yahoo.com , if you prefer that. 

mskolman

Are you talking about CHD? I have experience with that...not sure if that is what you are talking about though... 

KathW

I THINK she meant Congenital Diaphragmatic Hernia.

realisticdreams

I have a friend whose little boy was diagnosed after he went home, he had surgery & spent about a month in the NICU.  He's 18 months now, he just started walking and started OT & ST.  

If you want I can pass your email a long to her, or give you her facebook.