Hello Theresa,

I am so sorry about your son. It isn't fair that these babies and children are born with CDH and fight so hard and some do not survive it. We had two other CDH babies in the hospital with Noah and one did not make it. We are still close with his family. It is an experience that one can not really describe.

My Noah was diagnosed when I was 19 weeks with him. The stupid OB I had in WV didn't seem to understand why his stomach was up high. We did a little research and found out that it might be several things and then went to UVA Hospital for a second opinion - that we had to pay for out-of-pocket. Our plan was to have him at UVA. I went into labor very quickly and was in WVA so our son was transported and stable to UVA. I signed myself out AMA that morning and ended up admitted to UVA because I started bleeding - though nothing serious.

Noah always had good gases and he had surgery after being placed on ECMO. He was on ECMO for 10 days and had surgery on day 5 of life. He did manage to come home 02 dependent in a matter of 6 weeks and was receiving PT there before he left for swallowing and sucking. I tried to nurse him but it proved to be impossible. Too much shoved in his mouth and he didn't want to work that hard for his food. He always has been a good "normal" weight and we did resort to NAG feedings for a period of time. He still has eating and sensory issues. He doesn't like loud sounds or crowded places, he has issues with some textures on him. We are working on this. It will take some time. I don't know if this is a CDH issue because at Kluge's they have told me that many children who come from critical care as infants have sensory issues.

He also has re-herniated. Once at 9 months and recently he did again in September. His surgeon thinks he has him fixed this time - but he will not bet on it.

So far, it seems like everyone here is very supportive. My first post to CHERUBS was that I didn't think my son had a "bad case" because he always had good lung function - ECMO was used because he did develop a lung bleed but they believe that was from transport. I was virtually attacked by those women. I didn't mean CDH was not serious, just that in our son's case, he had good lung function and that helps recovery.

Noah is now 3 and other than his issues, he is fine. There are still some foods he will not touch and we don't know if that is because he just doesn't like them or his sensory issues. I dread the dentist at 4-5 years. He hates his teeth being brushed and we have spent a small fortune in tooth brushes, pastes and such to get him to brush. We hope that the Bob the Builder tooth brush set encourages him - he loves Bob.

Thank you all for your welcome ~ those with angels ~ I know they watch over these little ones that are still on earth.
Elise

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