Gastroschisis

Devin was born around two months early with an intestinal atresia caused by Gastroschisis. He has been living with Short Bowel Syndrome since he was two days old, had four major surgeries to try and fix his intestines and is now in the process of being listed for a small bowel and liver transplant. We were living in Germany when we found out that Devin would be born with Gastroschisis. We were told that it would not be a big deal and that he would be in the hospital only 4 to 6 weeks and there would be no long-term medical issues… At the most maybe two surgeries to fix everything and put it all back where is goes.

I SO wish that was the case! The military gave us the choice to stay in Germany and have him in a German hospital over three hours away from where we lived or pick up and move back to the US to have him. We picked to go back to the US and the military moved us to Tripler Army Medical Center in Hawaii.

It was nice for all of a week..At only 32 weeks along in my pregnancy and only being in Hawaii for 1 week I went into labor. I was put on meds to try and stop the labor for almost two day when we were finely told that they could not stop him from coming. All 4 pounds and 19 inches of Devin was born at 0337 on Oct. 2, 2006 Monday morning after only 9 minutes of pushing.

I will never forget his first cry! All I saw before he was taken away for his first surgery was he was a blond. At two days old I had not seen him yet and he had already been thru two major surgeries. After his second surgery his doctor came in to my room to tell me that “He will not live and if he does he will never be a normal child ~ He needs an intestinal transplant.

We are flying him to Seattle Children’s next week.” (I will NEVER forget a single word of what that doctor told me as she walked in my room.)  I had not even seen my little boy yet and I was being told that he would not make it. So we went from thinking at the longest a two month stay in the NICU to being told that he would have a very short, painful life. After his second surgery he had lost all of his small intestines but maybe 25cm and half of his colon. And was dilated to over three times the normal size.

Devin was flown to Seattle Children’s on Oct. 13th and had his third surgery on Nov. 4th (to make his bowel longer and not as wide). It seemed to work at first, but only a week after surgery he had dilated right back out and was not able to take any rate of feeds. After that happened, talk of transplant was brought up and the work up was started right before Thanksgiving.

But that was all put on hold until they could try the S.T.E.P. again in another three months.From Nov of ‘06 to today he has had a countless number of blood transfusions, line infections (blood infections), tummy infections, blood clots, ICU trips, UTI’s, PICC lines and Broviacs removed and replaced, and two Lipid overdoses. March 13th Devin had his fourth surgery (another S.T.E.P.) in hopes that this one would work and he would not need to be placed on the transplant list. It was working and everything was looking wonderful until he had gotten his latest line infection last month.

He had seven different bugs in his blood, two in his urine and a temp of 105.2. The ER doctor told us that if Luis had not woken up to check on him, Devin’s temp would have climbed so high that he never would have woken up that morning. Right after the infection was cleared and he was starting to look good again Devin started to stool from around his G-Tube. No blockage was found, but they did find that his small bowel was starting to dilate back out again. He now has a GJ-Tube in hopes that that will help things out a little while Devin now waits to be listed for a small bowel and liver transplant.More than half of the US has NO idea that small bowel is a largely needed organ for donation.  Many children die every year waiting for this organ that never comes because no one knows that it is needed let alone transplanted.  I have added some links for more info on these subjects if you would like to know more.Please pass the word and help save a childs life!  Even just some one knowing or talking about bowel transplantation and the Donate Life campaign can give a child a second chance.

• http://www.seattlechildrens.org/
• http://www.wcox.com.au/gastrosc.htm
• http://health.allrefer.com/health/gastroschisis-gastroschisis-repair-series-3.html
• http://cpmcnet.columbia.edu/dept/cs/news/research/2006_step.html
• http://www.regence.com/trgmedpol/transplant/tra09.html
• http://www.caringbridge.org/visit/devintoledo
• http://www.caringbridge.org/visit/jaycealan
• http://www.unos.org