Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form around week 9-10 of gestation. This can allow some of the abdominal organs to move into the chest, preventing normal lung growth and possibly also causing damage to the heart. This defect happens in about 1 in 2,000 births. Unfortunately, CDH is a rather unknown birth defect that most people don’t hear about unless their baby is diagnosed with it. CDH happens at about the same rate as cystic fibrosis and spina bifida.
Many hospitals aren’t equipped to treat CDH babies. They either don’t have surgeons who can perform the hernia repair surgery or they don’t have an Extracorporeal Membrane Oxygenation machine (ECMO) which is a heart lung bypass machine that is sometimes used in treatment of these critically ill babies. Our local hospital could not provide the proper care and so we traveled to Legacy Emanuel Children’s Hospital in Portland for our son’s birth and care.
The survival rate for CDH babies is around 50%. At Legacy and other hospitals that use the gentle ventilation technique for treatment there is a 92% survival rate for babies that don’t need ECMO. Some babies with CDH also have other birth defects, affecting the heart, chest wall (pectus excavatum) or spine (scoliosis). There are also some chromosomal abnormalities that can occur with CDH. Some babies, however have only the CDH and no other structural or chromosomal abnormalities.
So many little ones that are born with CDH have lasting problems. Often the lungs don’t grow to normal size or function so babies may still need the help of oxygen or other lung medications. Other common problems are with feeding, from acid reflux to oral aversion and problems with weight gain. Some babies also experience different developmental delays from extended hospital stays or ECMO and the side effects of different medications.
Below are some different links for information and resources on CDH. There are also more links on the sidebar on the right.
Another encouraging resource:
I wrote Owen’s story and it is posted on a really cool website called BeNotAfraid. This website is for people who have been given a poor prenatal diagnosis. There are a couple of CDH stories as well as many other amazing stories about some incredible kids and their parents.
CDH Research Study:
We just recently mailed off samples of Owen’s, Danny’s and my blood for a CDH research study that is being done at MassGeneral Hospital for Children and Children’s Hospital, Boston.
The woman that I have worked with is named Meaghan (her info is at the above link). I have had such a good experience so far with this (except for Owen’s blood draw, of course). But I would highly recommend looking in to this. We are far away but it has not been a problem to submit samples and paper-work. It has also been quite reassuring to talk with someone who deals with several hundred CDH folks and knows what is “normal” or not.
There are a ton of blogs where people (usually moms) write about their lives with a CDH survivor or CDH angel. On my main page I have listed many CDH blogs that I check regularly and that give a good idea of life with CDH.
One blog in particular is really good.
Jenn is a labor and delivery nurse who has a little girl (Sofia) with CDH. Her blog is so well written and explains so many CDH terms and issues in understandable language. Please take a moment and click on over there, I especially recommend this post, which accurately describes some of the emotions, etc. that go along with this whole CDH experience.
Sofia’s blog has lots of CDH info and many more resources.