What's It Like To Have A Child With CDH?

If congenital diaphragmatic hernia (CDH) is diagnosed in utero, from the minute the child is born his or her life is already very different from most babies.  If it is not diagnosed before the baby is born, everything will probably start off pretty "normal" until the baby has trouble breathing or feeding.  Then it will be a mad dash to try to figure what is wrong with the infant.

Often the parents don't get to hold their child, as the baby must be intubated instantly (after being delivered) because there is no way to tell how developed the baby's lung will be or if the baby will even be able to breathe.  

Then the baby is wheeled away to try to stabilze before next steps are determined.  

In our case, things happened so fast, I had to fight just to take a picture on my cell phone so my wife could see what our son even looked like. Our son was stabilized and within two hours transferred to Children's Memorial Hospital from Evanston.  Many CDH babies are born at hospitals that cannot support such critical babies and have to be life-flighted to another hospital stat!  

So what happens from here?  Test, tests and more tests.  How developed are the lungs?  Is the heart functioning properly?  Where is the heart?  On the left side of the body or right?  Has the liver moved into the chest?  Is the hernia on the left side or right side?  Can the baby breathe enough with a ventilator or is ECMO (a heart and lung bypass machine) needed?  How strong is the baby?  Are there any other defects or abnormalities?

When does the baby have surgery to repair the diaphragmatic hernia?  It depends on a lot of factors.  Our son had surgery at 4 days old.  But some go months before being deemed strong enough and ready for surgery.  With a survival rate of 50%, most doctors don't rush into surgery anymore.  

If the CDH baby is one of the lucky 800 to survive in their respective year and get out of the hospital, then life can still be challenging:

Feeding issues, major reflux, feeding tubes, physical therapy, speech therapy, weak immune systems, problems gaining weight, developmental delays, constant worry about re-herniating, and the list goes on and on.  

This is no easy birth defect to live with.  Life can be challenging for the entire family. There is no known cause and no real cure.  And with virtually no research funding...none will be found anytime soon.  Our son was born without a diaphragm at all.  Many have a hole that requires a gortex patch.  This patch can herniate and cause life-threatening complications.

Why is my child not eating?  Why is his/her reflux worse than "normal"?  Off to the ER to make sure the diaphragmatic patch didn't tear...this happens daily.  We live in constant fear of our children re-herniating.  A freak shot to the abdomen...a fall...a heavy cough or sneeze....there's no way to tell when it could happen.

For more information on CDH see the CHERUBS website or visit the Illinois CHERUBS blog.