Baby J Gastroschisis story
I found out our little baby would be born with gastroschisis at an anomoly scan at 16 weeks. We were advised there was a possibility the intestines may go back inside so we were sent for another scan however at week 18 it was a confirmed case. After that I had a further scan at 20 weeks and scans every 2 weeks thereafter. At a scan at 28 weeks the consultant was concerned about the growth of my baby and the amniotic fluid so it was recommended to have scans every week and after a further 4 more scans, the consultant was happy with the growth. I am now 32 weeks pregnant and plan on being induced at 38 weeks. Due to my location my care has been referred to the Womens Hospital and the baby will be cared for at the Childrens Hospital. We have been for a tour around the Childrens ward today and there was a gastroschisis case in, it was a little baby girl born at 36 weeks. She had only been born a few hours when we were there and had already had the surgery she needed. It put my mind at rest at just how caring all the staff were and the ward did not seem scary at all! We also met our paediatrician who will be performing the surgery who put our minds at rest with how many cases he had dealt with and confirmed the average recovery time is 6 weeks. We were also lucky enough to meet a 2 year old girl who was born with gastroschisis and it was great to see just how she was like any other 2 year old, running round and playing with all the toys.
I now only have 6 weeks left and in 10 days will be scanned 2-3 times a week. I just want baby to arrive now and know how severe the case is and get an idea of how long we will be in the Childrens ward for. If anyone wants to contact me for advice if you have recently been diagnosed with gastroschisis please feel free to do so at j6nnp13@hotmail.co.uk.
Mrs J
~Our Aiden Davis~
We found out when I was 14 weeks pregnant that our baby’s intestines were outside of its body, a condition called Gastroschisis. Me being 22 years old and the father 23, we both broke down. The first thing we found out about our unborn child was that something was wrong. My OB sent me to a maternal fetal medicine doctor, whom I continued to see throughout my pregnancy.
On March 16, 2010 we had an appointment with the MFM doc to do an amnioscentisis to see if the babies’ lungs had developed. Due to fecal matter and an excess amount of amniotic fluid they arranged for us to go the hospital that night for a c-section. I was due on April 10th.
Aiden was born at 6:20 PM and weighed 5.2 lbs. As soon as he was born a team of doctors took him to surgery. The pediatric surgeon came to us and told his that a large amount of his small intestines had been out and about 3-4 inches of them had died. He performed a surgery to remove that section and gave Aiden two colostomies. He had a yellow bag stuck with adhesive over them that the nurses had to drain of acidic green fluid frequently. For the next couple weeks, Aiden lived off of IV fluids and we prayed for weight gain.
April 8th, Aiden had another surgery to reconnect his intestines and sew up his belly. A week after, they began giving him tiny amounts to eat and slowly stretching his stomach. The last week of April they moved us from NICU1 to NICU2, a less critical area babies go to when they’re close to going home.
Saturday, May 1st, Aiden slept ALL day and didn’t respond as well to anything. His color also changed to a yellow/gray. His heart rate was staying around 200 while he was sleeping, much higher than his usual 150-160BPM when he was awake. We encouraged a nurse that something was wrong. She got the doctor to take x-rays, draw blood for cultures and tests, and the doctor told us that they would draw spinal fluid “just encase but about 1% of the time we actually find something wrong.” They came back and told us his white cells in the spinal fluid were around 6,000 and should be about 50 or 60, there was definitely something wrong. They knew he had developed meningitis, he was taken back to NICU1, hooked back up to IVs and began a blood transfusion,we were crushed. The doctor said that if we had waiting until morning, he would’ve been dead and that he was now “in God’s hands”.
They discovered his meningitis was due to Group B Strep bacteria, which I tested negative for. He received 14 days of antibiotics after his first negative blood culture. Aiden bounced back quickly, but due to the Gastroschisis, could not keep his food down. I was staying at a Ronald McDonald house, because our home was a hour and a half away. I would sit with him every day and every night. Sometimes, feedings would be puked right back up, every where. The surgeon said that we would just have a “laundry problem” and that he would spit a lot but would grow out of it. They began giving him a medicine that would decrease the amount of bacteria in his intestines, which helped tremendously. They went from discussing a feeding tube with us for continuous feeds at night time, to discussing NICU2 and going home. The medicine had been our ticket out.
FINALLY, May 27th we were dismissed from the hospital. This whole time, only 4 people other than the father and I had been allowed to see him. Over the next few days many family and friends came to meet our little miracle.
He just had surgery July 12th on a hernia in his groin, a hydrocele, and a circumcision. The only other possible surgery that may be in our future would be for an umbilical hernia, which the surgeon says usually goes away and he won’t operate until he’s 3 or 4 years old.
The only things that tell of his amazing journey are his scar (no belly button), and a horrible case of acid reflux which he receives Zantac for 3 times a day. He seems to have came through the meningitis unscathed. The doctors had actually prepared us for the worst, possible loss of motor skills, language, learning disability, a developmental delay.
His pediatrician say he is right on target with his milestones and may be even a little advanced. We never couldn’t imagined how beautiful, happy, and perfect our little one would be after all he had been through. Thanks to the prayers of churches, friends, and family, and an amazing staff of pediatric doctors and surgeons, Aiden lives a perfectly normal and happy life 
Looking for answers 10 years on…
Hello everyone,
Im new to this site although i have posted on another gastroschisis forum before.
My daughter niamh, just turning 10, was born in Aberdeen on the 19th July 2000 at 36 weeks. 90% of her bowels were outside of her body and to cut a long birth story short she left there 5 and a half months later minus 1 meter of small intestine, an illiostomy and 7 operations under her belt. She has undergone many tests since then including endocopys, barium meals, various scans blood and stool tests. She gets her blood taken every 6 to 8 weeksnow this has been going on for about 3 years now.
At nearly ten years old all the doctors can really say is that her bowels are ‘abnormal’ as they are distended something like colitis and she has Short bowel syndrome (not unlike ibs) and is chronic anemic, requiring the highest dose of iron that someone her size can manage. She recieves vitamin B12 injections every 2 months which i now do at home myself as this will be for the rest of her life. She is quite small for her age, and she has no belly button and a very large 5 inch scar with solid scar tissue underneath. We are currently waiting an appointment down in sheffield to see an endoscopy specialist who has and endoscope that can see further than normal ones. Niamhs bowels are ALWAYS loose, they always have been although she has control of them.
I guess im just looking for similar sufferers to share stories with, and i know that Niamh would love to email other children her own age to help make her feel like shes not the only one. Ive heard so many gastro stories, but many of them seem to be that after infancy and the bowel being put back, that no other side effects are present.
Hope to hear back from someone,
Regards
Sophie
28 weeks
So I found out during my first ultrasound at 12 weeks that my son has gastroschisis. At first I was absolutely gutted and so upset about the complication, but since then my mind has been put at ease by all the doctors we’ve spoken to. They’ve all been really reassuring and generally quite calm about it all! To be honest I really enjoy getting scanned so frequently…I can’t get enough of watching my little one on that screen! The foetal medicine doctors at the specialist women’s hospital I was referred to tell me that he is growing well, and that is still only the small bowel protuding from the defect in his abdomen. Everytime I’ve been so far they’ve seemed really positive and happy with how things have been going, so it’s hard not to be optimistic. I don’t want to start worrying until they do if that makes sense! But it seems like one day things can be fine, and then all of a sudden things could get much worse 
The only part that freaks me out is the uncertainty of it all…as I’m fully not expecting to even make it past 36 weeks. Its so hard to prepare for everything when you don’t really know when the baby will be coming! My antenatal care is being completely transferred over in only 6 weeks time, so I’ll be getting scans weekly and whatever else they’ve got planned. Me and my partner are currently waiting for a letter from the Children’s Hospital that bump will be transferred to to have his operation. Hopefully things will carry on going smoothly. I’m also reassured that I can have a vaginal birth…I REALLY don’t want to have a c-section, as then that puts me out of action really for 6 weeks after while I recover. But my foetal medicine doctor says even though they’ll probably induce me, its unlikely they’ll opt for a c-section unless there’s further complications, as a natural birth is actually better off for gastro babies.
Sorry for the rather long post…just wanted to jot everything down somewhere really so I can make sense of it all in my mind! Input is appreciated though.
Louise x
