Hi
I’m 20 weeks pregnant and my baby has gastroschisis. I’m currently living in Suffolk and go to Adanbrookes for specialist tests and monitoring. For a while I’ve been hoping to re-locate to Cornwall, and am now in a position to do so in the near future. I was wondering if anyone knows if there are any specialist units in the south-west, or what the general practice is for mothers living in this area?
Thanks in advance for any help!
Sarah
Posted by kelsey16 | Posted in Birth Stories | Posted on 18-06-2008
Hi Everyone. My name is Kelsey and I live in the NY area. I recently had a baby with gastroschisis and am now for the first time looking at the information available to parents on the internet. I am so thankful that I did not spend much time looking at the information available on the internet, as so much of it is scary and would have only worried me more. I thought it was important to share my experience with other parents who are expecting babies with gastroschisis and let them know that your baby will be okay. I first learned that our baby had gastroschisis when I was 12 weeks pregnant. I remember the hearing the words birth defect about my baby and feeling like I could not breathe. It was a very scary time. For the remainder of my pregnancy I was seen on a weekly basis by a high risk doctor at New York Presbyterian Hospital. I was scared, but I also remember how great it was to get to have an ultrasound every week and see our little girl!
Our daughter, Ryan was born naturally at 37 weeks and weighed 6 lbs. The delivery was without any problems and aside from the gastroschisis Ryan was a healthy beautiful baby! She had the first of two surgeries within a few hours of her arrival. After her surgery she was transferred to the NICU where she received excellent care. Yes, it was very hard to see our baby hooked up to so many monitors and with tubes up her nose and down her throat. Those first few days were very hard as we could not hold her and I felt so helpless. As the days went by she continued to improve. 5 days after her birth she had her second surgery to put the rest of her intestines inside and close her tummy. 9 days after she was born all the tubes were removed and we could finally hold her. It was amazing!! Each day she continued to make progress and the dr’s gradually increased the amount of milk she could eat. I remember the first time she tasted milk – the look in her eyes was priceless. Ryan drank a few cc’s and let out this big sigh as if to say now that’s what I have been waiting for! Each day we would celebrate the increase of milk she could drink and how many times she had pooped. I never realized the small things would become so important. Ryan was released from the NICU 24 days after she was born and is doing great. She has had one follow up appt with the surgeon and he sees no reason for her to have any follow up appointments aside from her regular pediatrician visits. She does not have a belly button and has a small round scar about the size of a pea on her tummy. She is now 3 months old and is a normal healthy baby!
I just want to assure all the parents who have learned that your baby has gastroschisis that your baby will be okay. Yes, every situation is different and I am not a dr, but having gone through everything I am confident that your baby is in excellent hands and will receive the best of care and be at home in your arms before you know it!
Posted by Dean | Posted in Growing Up | Posted on 18-04-2008
Hi my name is Danyel and I live in NC!
But I was born In Iowa in 1972 and I was born with this defect. I was only a 3 pound baby and that was along with all the IV’s and all the surgical garb. I had quite a few surgery’s when I was a baby and I also have my battlescar on my belly!
I had no problems until just lately I started having servere stomach pains and I noticed that my belly felt like I had a ton of gas and the dr had me go get a ct scan and found out I had a incarsarated hernia and an upper intestine blockage! Stemming from my birth defect! I had this done last year!
Yikes now it can get scary with this kind of birth defect since Dr’s don’t know what they are going to get into until they cut me open! And with all the scar tissue and not knowing if all the body parts are in the right area, very nerve wrecking!
Luckly my Dr’s at the Universary of Iowa Hospitals did such a wonderful job on me when i was a baby all my stuff is in the places or there about! When I was a baby they put a mesh in me that the dr built up my stomach walls and I remember that when I was little I was preached about not getting hit in the belly area or I would Die! I had no stomache muscles to protect my inners.
Well I hope I helped a little I am now 35 years old and doing well! I am married to a wonderful man who dosen’t mind the scar at all and loves me for who I am ! 
Danyel
P.S. If anyone has this birth defect please email me maybe we can chat! I would love to meet sum people that I can relate to with this Birth Defect!
coolhippychic@aol.com
Let me know it’s about this subject or it may end up in trash! TY
