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
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~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 
