Gastroschisis

Hi everyone, this is our story. My son is 3 months old and was born with gastroschisis…

My son was diagnosed with gastroschisis at my 18 week ultrasound. I knew immediately what is was and from then on I had routine ultrasounds and spend the days researching and trying to stay positive.

I started seeing a very caring GP in addition to my local clinic and this extra care really helped me get through the pregnancy. Having the baby checked often really helped to ease my mind during the pregnancy, so for those pregnant now I’d recommend seeking as support as possible.

I was going to be induced at 37 weeks but my son decided to come even earlier and I had an emergency caesarian at 36+2 weeks. I delivered at a major hospital 3 hours from home who have paediatric surgeons on call so his gastroschisis was repaired within four hours after his birth. He had a primary repair and the whole thing was completed quite quickly, but I dont think the outcome would have been affected if he had to wait longer for his surgery.

My son had morphine for pain relief, then baby panadol but was off all pain meds by day 3. He was 5lb 12oz, 4 weeks early, and we spend 16 days in NICU. During our time in NICU we were so proud of him for going through what he had to and now he is a happy healthy 3 month old.

This has only been a short one from me for now but please feel free to contact me with any questions or support you may need. I also have photos if anyone would like to see some.

My son was born with gastroschisis on October 4, 2006 at 36 weeks, which is pretty normal for babies with gastroschisis.

We had found out that he would be born with this ‘defect’ around 14 weeks. We had plenty of time to do research and to prepare outselves, which I was VERY thankful for!

When he was born they immediatlly took him and wrapped up his belly so that he woudn’t get an infection. Therefore I didn’t get to see him after he was born for about an hour, that was the longest hour EVER! They then took him to Children’s Hospital to do his surgery and admit him to the NICU. His surgery went fantastic, they got all of his intestines in on the first try, so he didn’t have to have a silo, and we were very thinkful for that. After his first surgery he did very well for about 2 weeks, he was doing great with his feedings and had two bottles. THEN… he ended up getting NEC, which I’ve got to say was the most frighening thing!! He got SO, SO sick. He had a fever for about a day and nobody knew why. That day his father and I were at his bedside pretty much all day. We went home in the early evening and I went back up to see how he was doing a little later, I went to get him out of his isolete and his nurse told me not to because he was too sick (still not knowing what was wrong). So being so upset and in tears I went home to go to bed and around 11pm his nurse called us to tell us that his surgeon had been down to see him and that they would be doing surgery on him at 5 am. We go the call around 4 am to come in for his surgery. When we got there we had been told that Travis got so vad during the night that they had to give him morphine and put him on a venilater. That surgery went well, it was long because the doctor didn’t know how much of the intestines had gone bad until he got in there. Ended up that not too much was bad, thank God!!!! He had to do another surgery 2 days after that one to reattach the ends that he had cut out, and that one as well went very good!!

Travis got to go home after 71 days in the NICU. Oh yeah, he went home with an iliostomy becuase he had a colon atresha (sorry, I have no idea how to spell that). Which means that his colon was closed or just too small for anything to pass through. So at 5 months he went back for yet another surgery to reverse that. He was only in the hospital for 6 days for that one.

Now he 7-1/2 months old and doing wonderfully!!!

We couldn’t be more proud of him!!! He is so, so unbelieveably strong!!!

At 12 weeks I found out my daughter had Gastroschisis. She was delivered on october 6th 2006 at Hospital of the University of PA

She was treated next door at The Childrens Hosptal of Philadelphia. Layla stayed in the NICU for 4 weeks and was discharged. Since then we have returned to the hospital three times for stomach viruses. Although Layla is very healthy today she still relies on an NG feeding tube for most of her nutrition. The doctors and speech therapist originally told me it would take about a year for Layla to be able to eat and thrive on her own.

Well here a year later and i feel that there has been very little progress. Will my daughter ever eat on her own ?