This was the thought going through my head as I watched my CDH survivor hunched over from stomach pain and nausea a few months ago. Now keep in mind he wasn't even two years old at the time.
Unfortunately, this is all too common among families dealing with the affects of a congenital diaphragmatic hernia. My son was one of the 800 to survive after being diagnosed with this birth defect back in 2010.
There is no way to really know if your child re-herniates without an Xray. Some children experience uncontrollable vomiting (my concern) while for others it manifests itself in the complete opposite. So what did we do at 6:45 pm? We drove nearly 1.5 hours to Children's Memorial Hospital (in rush hour traffic) to have our son checked out by an ER doctor. We'd already tried going to other, more convenient hospitals in the past and after discovering the severity of our son's birth defect, they just shipped our son to Children's anyway. So we figured that we'd cut out the middle man this time.
After a few hours in the ER and still not being able to hold anything down, we finally went for Xrays. The ER doctors were trying to hold off on Xrays because they didn't want to expose our not even 2 year old son to any more radiation than necessary since he's already been exposed to so much in his short life so far. But in the end, we had no other options. We had make sure our son's artificial diaphragm (he was born without one) did not tear as this can be life-threatening.
The Xrays showed that our son did not re-herniate (this time) which was a huge relief. But we might not be so lucky the next time.
We are very lucky to live in the Chicago area with so many amazing hospitals. Unfortunately, there are 52,000 children born per year around the world with CDH and many don't have the care available that we do here in Chicago. In fact, the care in the US alone is not consistent from state to state or hospital to hospital.
Why is that? Lack of research! To put this into perspective, Cystic Fibrosis which occurs just about as frequently as CDH has about $79,000,000 per year allocated by the NIH for research. This is compared to around $4,000,000 for CDH research. The Cystic Fibrosis Foundation has revenues of over $300,000,000 per year to be able to provide all the great support and services they offer. This is compared to CHERUBS with only around $60,000 per year in revenues.
Senator Sessions of Alabama recently introduced the $50,000,000 CDH Research Bill to Congress. This Bill is intended to raise awareness of CDH and also reallocate existing research dollars towards CDH. These funds are desperately needed to try to find the cause for CDH and help promote better, more consistent care for those children (and adults) with this birth defect. I encourage you to sign the petition supporting this Bill and write our Senators asking for their support (especially Senator Kirk who is actually on the committee reviewing this Bill right now).
How can you help closer to home? Come join me at the 1st Annual CHERUBS Kids Carnival benefiting children with CDH (like mine). This event is open to the public and will be held in Highland Park at the Rec Center on October 14 from 11-2.