Gastroschisis

My Grandaughter was born  with  scary birth defect and lost all of her intestines but seven inches. We were told she might not live a month. But God blessed us and now she is 16 months old. She is on Tpn therapy, and she also gets Omegavin from Germany. It has not been approved by FDA here in the states yet. She can’t eat because of the lack of a stomach. She throws up a lot. But she is the happiest baby you could ever meet. Please if there is anyone else out there that knows something about  life span for this , Please contact me at iaabac1@aol.com Thank you Shelia

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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

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My son was born in the National Naval Medical Center in Washington, DC on the fourth of February (Superbowl Sunday) by C-section at 34 weeks.  I was stationed in Germany when we found out he had this condition and after a lot of paperwork, my doctor at Landstuhl Regional Medical Center had me sent to NNMC to deliver..

I went in around 9 in the morning because Azriel had not moved in almost 24 hours.  Upon monitoring, they found that his heart beat was dropping dangerously during my contractions, and he was not recovering well.  I was told it would be better to monitor him outside of the womb and they would be inducing me.  They waited a few hours, gave me an epidural that did not reach my left side and had to be redone, and then decided a C-section would be best.

I was expecting not to be able to see my baby until after surgery, but when the surgeon we had met on a tour of the hospital came in to talk me, it was to ask if we wanted to let my little boy live or not.

Sometime during the birth process, the hole in my son’s stomach through which his intestines were protruding closed in on his bowel, cutting off circulation.  The bowel itself died, and as a result, the surgeon could either remove his entire lower intestine creating severe short bowel syndrome or just let him die.

My husband and I were both horrified and immediately told him to go save our son and quit asking stupid questions.

After about an hour, I finally got to see Azriel.  He was a little 4lb 6oz tube factory with a mop of wet, black hair that covered his whole head.  He was beautiful to me and I didn’t even look at all the tubes or the raw-looking cut across my little baby’s abdomen.  Me and my husband were both instantly in love.

After my short stay in the hospital, my husband and I “moved” into the hotel/barracks across from the hospital paying $30 a night waiting for paperwork for housing at our new assignment post.  We carried all of the flowers and “It’s a Boy” balloons out of the maternity ward and were asked by an innocent passer-by “Oh, where is the baby?”

Walking across the street three and four times a day to watch our baby sleep were the highlights of our days. In talking with our baby’s surgeon, we decided to allow him to reconnect his bowel (which had been turned into an ostomy, basically opening out of a hole in his stomach) to his colon to see if anything would pass through.  (Which went well, he pooped within days!)

Sitting down with specialists and surgeons also took up a lot of our time as we listened to our son’s options.  Depending on how well he did, he would be considered for a small bowel transplant.  We were told that since TPN would be his main source of nutrition for a long period of time, he would also be put on the list to receive a liver as well.

As the weeks went by, my son faced no real problems.  He came off the respirator within 24 hours of birth.  Maintaining a working central line in his arm or leg were difficult as he often pulled them out.  We watched him grown bigger and stronger, passing 5 lbs and working his way on to 6.  The breastmilk I pumped and froze tearfully, wondering if he would ever be able to drink it, began to be infused into his stomach through his G-tube, a small feeding device surgically placed in his stomach, and he hit a growth spurt that we were all glad to see.

After about 2 months, everyone (his GI specialists and pediatric surgeon and NICU staff) felt comfortable sending him home on TPN.  My husband and I were to be trained on his home pumps and in the mixing of his TPN.  Also, we were taught how to replace the dressing on his broviac (central line) and clean around his G-tube.  A week before he was to be released to a half-way facility where we would be monitored as we cared for him prior to him returning home, we noticed he was a little less active and seemed very tired.  We informed the nurse who said it was normal and not to worry.  The next day we were met by all of his doctors, who informed us he had a fungal infection; a fungus had attached itself and was growing on the plastic on his broviac.  Also, they had drained large amounts of fluid out of his stomach so they were no longer giving him breastmilk until they could do a study to see if his intestinal track was blocked some way.

This was our first setback.  He was treated for the infection, and the nurses began suctioning his stomach with a syringe from his G-tube every 6 hours.  After about 2 or 3 weeks, a nurse let it slip that he would be coming straight home, on the antibiotics.  We were exstatic and were finally told by the doctor that we would be “rooming in” in the next few days.

For almost a week we stayed with Azriel in a hospital room.  Every 6 hours we suctioned his little tummy and turned off his TPN to administer his antibiotic.  The nurses came and changed out his TPN every 24 hours.  On the last day, a nurse from the company who makes my son’s TPN pumps came and showed us how to program the TPN, Lipid, and medicine pumps.  On the 17th of April me and my husband put our little 7lb miracle into the carseat that had been waiting for his homecoming for months and did what we had watched countless other families do-carry our baby down the hall and out of the hospital.

In a blur, a home nurse met us at our home with a huge box of medical supplies which she explained the use of.  She watched us to make sure we knew how to change his TPN and then showed us how to add the vitamins to his TPN bag with needles.  The first days were hard; Azriel had no sleep pattern from his stay in the NICU.  He did not sleep at night.  We were up with beeping pumps, we were up draining bile out of his stomach, and we were up with changing out his medicine, but mostly we were up with a crying baby.  We got no sleep, and with both of us being active duty military, one of us had to report each morning at 0630.  Life was very hard.  We got frustrated.

On his first visit to his GI doctor at Walter Reed Army Medical Center, she told us that his G-tube was too small.  She did not have another one in the size he needed, so she gave him one that protruded 4 or 5 inches out of the cavity in his stomach while we waited for the one that is flush with his skin to be delivered.  He bled and leaked terribly.  When we got home, we realized that we could not drain him out of this one, and Azriel’s little tummy was getting full.  A call to the home nurse resulted in an ER visit.  However, as we were getting him ready to go, my husband caught his broviac on the wheel of the bassinette and pulled it completely out of my son’s chest. In a panic, we packed our very calm, very quiet baby up and rushed him to the hospital.

Azriel stayed at Walter Reed for about a week and was then released.  He was only home for a few days when he choked on his own spit while crying and stopped breathing.  We performed CPR on him like we were taught in the NICU until the paramedics arrived and gave him oxygen.  This resulted in another week-long stay and a swallow study which revealed that he could be fed orally as long as it was thickened with a special honey used to thicken baby formula so that babies do not swallow too fast and choke.  FINALLY I was able to watch my son suck down some breastmilk from a bottle.

Azriel is presently 9lbs, 4 months old, and waiting from the comfort of his own home for organs.  We will attempt the STEP procedure (hopefully) in the near future to try to avoid the transplant.

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