Hi, hopefully this will give hope and a positive outlook to anyone who is expecting a baby with Gastroschisis.
When my husband and I where told we where expecting a baby with Gastroschisis (2008), our world fell apart. We thought we where going to have a child with a permanent illness, who would not be able to digest food properly and never be a “normal” child. We couldn’t of been further away from the truth.
Throughout my pregnancy I was told I wouldn’t make it past 32 weeks (Gastroschisis pregnancies never normally go full term). I was offered a termination twice at our local hospital. I now feel angry and wonder why this was the case since understanding what the condition is and seeing how perfectly normal my daughter is today. I was scanned every 2 weeks at my local hospital, where they checked my baby’s size and my amniotic fluid levels. I was then referred to Kings College Hospital London, where I was again scanned every 2 weeks and was finally induced at 38 weeks. Our daughter was born 12 hours after being induced and weighted a tiny 4lb (Don’t worry not all Gastroschisis babies are this small). I had a normal delivery.
Here’s a quick summary of our experience so you know what to expect:
Our baby was taken immediately after birth, her bowel was firstly wrapped to her in cling film and by the time we got to see her (3hrs later) her bowel had been put into a silo and she was in an incubator. Over the next week her bowel was gradually eased back (a little bit each day) until the 4th day when all of the bowel was back in and she was ready for her operation. During this time she unfortunately caught an infection and the operation was delayed for a few days. Her operation was finally carried out 7 days after birth.
Following her operation she was fed TPN (Total Parental Nutrition) for a week and everyday they drew back the green bile levels in her stomach through a tube in her nose which also fed down into her stomach. When her bile levels dropped the hospital started her on my expressed breast milk. She sampled her first bit of breast milk (also through a tube via her nose to her stomach) 1 week after her bowel had been closed (2 weeks after birth).
We finally got to hold her when she was 2 weeks old….and I will never forgot that first cuddle. She was in an incubator for 2 weeks and then in a hospital cot bed for another 3 weeks where I was also able to breast feed. Her nose tube was removed and after 5 weeks we finally got to take her home. By the time she was discharged she was breast feeding and just like any other baby.
There where a lot of ups and downs and upsetting moments during her time in intensive care, but you have to remain strong and positive. You have your good days and your bad days.
I thank the hospital staff and surgeon every day, as her operation was performed through her bellybutton. She doesn’t really have a scar. They kinda reconstructed a belly button for her, which looks like a larger than normal, flat, slightly mis-shapped belly button. We are really pleased with the result, as we were worried she was going to have a scar across her stomach. It doesn’t look like a normal belly button (as its totally flat, with no indentation), however considering how the baby is born and everything they go through, it looks petty good. I know not all hospital do it this way.
Our daughter is now 5 months old and so far everything seems to be going well. We haven’t had any set backs so far and we have just started introducing her to other foods (banana and baby rice) as well as her milk. We had a check up last week and where told she has a slight hernia, however its nothing that needs addressing now and hopefully never will.
If you have just been told that your baby has Gastroschisis or are due to deliver any day, the most reassuring thing I can tell you is that your baby is just as “normal” as any other child. Your baby will not look any different or behave in any other way. He/she will breath, smile, love and laugh like any other child.
There of course can be complications and every case is different. There can be extreme cases of this condition and you should ensure your hospital offers you as many scans as possible to monitor your baby’s condition and the bowel.
During our 5 weeks at Kings hospital there was another 5 babies all with the same condition in ICU (Intensive Care unit). As parents we all discussed our experiances and it soon became apparent that every babies recovery time with Gastroschisis varied. This ranged from 4 weeks to 3 months. We where told by the hospital that only 4 babies over the past 10 years (in there care) had died from this condition. The overall success rate is extremely high.
Good luck and remember every baby is a special gift from god and gastroschisis babies are no exception.
