Made of Gray

Gastroschisis - 6 Years Later

Holly D GrayComment
Six years ago we got the call asking for an urgent ultrasound because our unborn baby "might have spina bifida."

Six years ago we sat in a private room while the OB we had seen twice flashed large medical books at us. Pointing to illustrations and talking in what seemed like extremely slow motion.

Six years ago we found out that, our daughter, Caleigh would be born with Gastroschisis.
It's been a long six years since that day, but this morning I woke up thinking about Gastroschisis. Not every step that Caleigh has taken since that day, but just the condition itself. I rarely think about the birth defect that changed our lives. Really, our family doesn't even fit into the Gastroschisis box. Because of that and the pain involved, I've stepped away from the diagnosis and the defect. I've distanced myself from it.

There are the babies that are born with Gastroschisis that have their abdomen closed and they go home with little to no damage. Their lives are normal and if they feel like it they typical undergo plastic surgery to make the perfect little belly button at some point in their lives. 

There are the babies that experience bowel complications and end up with the diagnosis, Short Bowel Syndrome. This is the 1 out of 10 statistic that I seem to read everywhere. They tend to be delayed because of their hospital stays and nutritional deficits, but hopefully with surgeries, a healing gut and time at home they catch up on their development. They duke it out, on and off, with short gut the rest of their lives.

Then there is Caleigh. Born very premature due to Gastroschisis complications. Surgery after surgery, including nine bowel procedures. Prematurity and extremely difficult surgeries causing cerebral palsy, dystonia and a long list of other challenges that physically hold Caleigh back. It's the trickle down scenario. One thing leads to the next. 

I'm sure there are others that feel like they run in between those three lines, but I have yet to meet them.

Years ago, I stopped reading and participating in Gastroschisis groups. Everyone that was pregnant at the same time as we were, had babies that fit into that first category. We were the 1 in 10. Caleigh was still in the NICU at that time and we just didn't fit. I found people complaining about their child's 10 day NICU stay and imperfect belly button to be a slap in the face. I was done and more importantly I had more labels to address and learn at the time. 
This time of year is an anniversary that I would rather skip, but my mind drifts back to that time like it was yesterday.

So like I do, maybe once a year, I searched Gastroshisis to see if anything new has developed in the "why" department since I last looked. Thankfully there is still ongoing research in this area. This morning my findings were a little more interesting. When Caleigh was born the statistics were 1 in 10,000. They are now 1 in 1,500-5,000. It's becoming more prevalent. Why?

There is a theory that Gastroschisis is the remains of an Omphalocele sac that has been reabsorbed by the body. Omphalocele is a genetic condition that looks a lot like Gastroschisis. The guts are still outside the body, but in the case of an Omphalocele there is a sac encasing them. Interesting.

There are links to Gastroschisis and those living in the farm belt of America. Contaminated ground water from those farms being the cause. We live in Texas. I can believe it. 

Then I read about a US Navy connection. Numerous families have been members of the military, but the Navy specifically. Eric served in the Navy for four years. He took whatever injections that were required and I went to the Navy hospital, doing as I was told, because that is where our doctors were. 
The most interesting note was that experts now believe that there are specific unknown genetic recessive traits that perfectly mix with unknown environmental factors to create Gastroschsis. They still don't know, but now they have thrown in the idea of genetics. 

After Caleigh was born, we were told repeatedly that Gastroshisis would never happen again to us. I fluke of nature. Years ago I knew of one family that had two children with Gastroschisis. Researchers were investigating this phenomenon at the time. A quick search this morning showed over a dozen, just on one message board, that had more than one child born with Gastroschisis.
More information comes out each time I look. It'll be another year of so before I look again though. Reading the same information that I read right after the diagnosis brings me back to that scary time. It's good to stay informed, but it's always more important to more forward in life.
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