CDH - Congenital Diaphragmatic Hernia Query

[vikram_gupta_ra]

My wife is 24 weeks pregnant and our son has been diagnosed with CDH (left sided). Until today only the intestine are up in his chest. The stomach is below the diaphragm. We have consulted several Senior Pediatric surgeons who have handled CDH cases before. The doctors have been advising us that there is a very good chance that our child will grow up as a normal kid with NO health problems. This is very the unlike the articles and blogs we have been reading on the internet which talk about long terms problems like pulmonary hypertension, respiratory porblems, growth and developmental problems, hearing loss, feeding problems, heart problems..etc..etc..

We would like to hear your thoughts, experiences and views on this subject. Can a child with CDH grow up to be a normal kid ? Are we receiving the correct advice ?

Regards
Vikram

[scotty194]

My grandson was born with CDH. H was born a month early which was probably a good thing.  He was a little over 5lbs, We had no idea until he had breathing problems right at his birth, that this is what he had.  It was just his intestines in his left lung.  His lung was fully developed.  He is 2 years old now and he is a little monster!  He is bright and beautiful.  He had a surgery at the children's hospital in NY and was there for 2-3 weeks. I helped his mom take care of him that summer.  He ate like a little hog and still does.  He did not go through his milestones like his daddy did...walking talking...but neither did my other grandson.  My kids did everything early but I was with each one of them for the first 5 years.  When I take care of my grandson now, except for the scar below his rib cage, you would never know he had it!  The keep checking him...STOP LOOKING FOR TROUBLE ON THE INTERNET!  I did that when Aiden was born and I got SO upset.  Every child is different and how things are handled.  I think that we should have known in advance with all the scans they have today nobody saw his intestines in his lung?  I am sure if things had turned out otherwise, I would have been demanding WHY!  Like my friend who had a baby 3 years younger than my 16 year old daughter...he was born with 1/2 his heart, AGAIN, found out AT BIRTH.  I remember Britt's sonogram and they SHOWED me the 4 chambers of her little heart...why not Jake?  The parent's still would have brought him into this world, but they would have been prepared.  It is a terrible thing watching your grandchild thru a plastic box not able to touch him.  But all is well and I keep a picture of him after his surgery, wondering if it was the only one I was ever going to take of him....God blessed us!

[mycdhife]

Hello and I'm sorry your son has cdh. My daughter was born in 2006 with left cdh. We did extreme measures. We live in Iowa and traveled to Children's Hospital of Philadelphia (16 hours away) for her birth. Yes there is a lot of mis-information about this birth defect. You will find conflicting stories. I will tell you the survival rate is still pretty grim. Half of the babies born die. The reason is...this birth defect, affects so many vital things in a baby. The lungs usually take the biggest hit. The hypertention is severe. They don't know how bad things really are until the baby is born and test can be run.

Stay positive! This is key. Our daughter is a survivor. She turns 4 on the 28th of this month. The doctors are right the babies can be normal. Some are BUT most will have some kind of issues ranging from a little reflux to being trached (on a ventilator) However DON'T let this scare you. They are such wonderful blessings. I have become such a strong person because of my thrid daughter Ava. She has taught me that we must cherish life every second. None of us are assured of tomorrow.

We have a blog http://avaslifewithcdh.blogspot.com and http://cdhawarenessvideos.blogspot.com/

Keep the Faith and Hope Alive!