CDH Information
Congenital Diaphragmatic Hernia (CDH)-
Congenital (born with) Diaphragmatic Hernia (diaphram has a hole) is a birth defect that affects approximately 1 in 2,500 babies, 1,600 a year, and half of them do not survive. This defect is very rare! Most people have not heard of CDH until their child is diagnosed with it. The cause is still not known!
CDH means your baby has a hole in his/her diaphragm. This hole could allow for abdominal contents to float up into the chest cavity. It can range from just the stomach floating up, to having the stomach, instestines, liver, bowels, and spleen in the chest cavity. The hole varies in size, every baby is different. The abdominal contents that may float up into the chest cavity presents a major problem. These abdominal organs take up a lot of space and that will compromise the lung development and push the heart over to the side. With the heart being shoved over, it has a greater risk for heart problems.
Some babies with CDH have a smaller hole and can be fixed using the diaphragm muscle. Other CDH babies have a much bigger hole which require a gortex patch. There is a right sided hernia and a left sided hernia. I believe it is still undetermined which is worse.. if you ask me, they both suck! The right sided CDH (RCDH) seems to be detected later in pregnancy- only from what I’ve read so don’t quote me on that- and, depending on the size, the whole liver could go up. Kayla had a left sided CDH (LCDH) and portions of her liver were up. So either one, it’s not fun.
gortex patch
Kayla had a patch in her abdomen to allow time to stretch her muscle because she had a lot up in her chest cavity. When they removed it they saved it for us. So this is what the gortex patch looks like- but much bigger I’m assuming for her diaphragm… this was just to give her tummy time to stretch before stitching it together.
Some babies require the use of the Extracorporeal Membrane Oxygenation (ECMO) machine. This is a machine to help the baby rest. This machine helps the baby rest his/her lungs and heart. The ECMO does the work for them so they do not have to.
CDH babies will be on heavy sedation from birth. Some of the drugs that they may be put on are fentanyl, versad, pavalon, pentabab, or morphine.
Some links that provide information on CDH:
Children’s Hospital of Philadelphia (CHOP)
Cincinnati Children’s Hospital
A Parents Guide to Congenital Diaphragmatic Hernia (CDH) ** Excellent Information
