What is CDH?

Once we got home we spent hours upon hours researching congenital diaphragmatic hernias on-line. 

It was all so scary, but this is what I learned:

• In baby's the diaphragms job is to keep the organs in the lower part of the belly.  With CDH there is a hole in the diaphragm that allows the other organs to migrate into the chest cavity.  When this happens there isn't enough room for the lungs to develop correctly and the heart can be pushed to the side or impacted as a result. 
• It is a very serious defect that happens in about 1 out of every 3000-5000 pregnancies (about as often as cystic fibrosis or spina bifida). 
• In general the chance of survival is 50/50, but with the right hospital and right doctor the chance of survival is usually greater. 
• It is most common on the left side (85%)
• 40% the time it is associated with other genetic/chromosomal defects/disorders. 
• The baby will need surgery once they are stable to fix the hole and relocate the organs.
• The baby will not be able to breath on their own due to the underdeveloped lungs, they will need a ventilator.
• Some baby's (about 50%) need the ECMO machine, which basically makes it so the heart and lungs don't need to do anything---it pulls the blood from the baby's body, oxygenates it, and puts it back ---this is very risky.
• If the liver has not gone through the hole the chance of survival is greater
• The lung-to-head ratio can be used to determine survival if done early enough
• The baby may develop lung-disease, GURDS, or need oxygen and/or a feed tube for months or years after surgery  
• Recovery can take between 6 and 24 weeks

Learning all of this brought up so many questions about Makenna that we can't find on-line....What side is the hernia on?  What organs are through her hole?  How big is her hole? Where is her liver?  What is her chance of survival?  How long will she be in the NICU?  Is her case serious enough to need ECMO?  Does she have a genetic disorder?  What is her lung-to-head ratio?  What hospital should we go to? 

The scary thing about CDH is that even with ultrasounds and other tests, it is hard to answer all of these questions.  Every case is totally different.  No two are alike.  You can have a baby with a 20% chance survive, while a baby with an 85% chance does not...it all depends on millions of different variables that can't be predicted.

We also discovered that CDH is kind of like a puzzle.  We will add new pieces as time goes on, but we won't see the full picture until the journey is pretty much over.   It isn't until the surgery that they will know exactly how much of a diaphragm she has, but even then it will be several weeks after surgery before we know how she will handle the surgery, and several weeks after that before we know what kind of long-term complications she might have. 

It is a waiting game...a very scary waiting game...that will be taken one day at a time for many, many months.  That being said, with the help of technology we are hoping to find out as much as we can about Makenna's condition before she gets here. 

**On an ironic side note**
Another thing I learned in my research is that CDH has it's own awareness day and ribbon.  The ribbon is ironically the exact same shade of turquoise we chose to paint her bedroom...many weeks before we had even heard of CDH.  I definitely can't wait to bring her home to her own very special turquoise room!