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!

my boyfriend and i were discussing the matter and he gave me the idea to look it up on the internet and walla! i get the impression after reading about it that the doctors that fixed me up as a baby may not have known exactly what they were doing. i am concerned with that now. so, if there’s anyone who’s lived with this their whole life who has any advice, i would love to hear from you!

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