Our Gastroschisis Journey.

When I was 13 weeks pregnant we found out that our baby girl would be born with Gastroschisis , and like any other human bein recieving such terrible news that our baby would be born with a birth defect we felt like the whole world crashed down on us. I didn’t smoke, drink nor did I do anything that would put my pregnancy at risk so ofcourse we had a million questions on why something like this could happenn. My doctor reassured me that it was nothing that I had done and that I couldnt have done anything to prevent this. This stuff just happens and they didnt know the cause to it. They told me that this happens to young mothers under the age of 21 and that there was a 10% chance of still-birth, that just put the cherry on top of the cake , as if it wasnt enough to know my baby was going to be born with Gastroschisis but that I could lose this baby at any given time of my pregnancy. 10% isnt a big number but to me it was enough to make me worry. We went home not knowing exactly was Gastroschisis was so we researched on the web , that didnt make it any better we read such severe cases which were probably worst case scenarios and I would think that everything I read my baby would be born the same way, and again my doctor reassured me and told me not to go on the web and read anymore. As my pregnancy went by our doctors visits kept increasing they needed to monitor the baby and make sure she was doing okay.
On New Year’s Eve I started having contractions , I was 38.6 weeks pregnant so we rushed to the hospital, I was 3cm dilated and my contractions were 6 minutes apart. Me and the baby were being monitored , until they seen the baby’s heart rate was jumping too high , they had to do an emergency C-section because they thought the labor might be stressing the baby out due to the Gastroschisis.
Our little miracle Liliana was born January 1st, 2010 at 4:18a.m at 5lb.141/2 oz. . This is when it all began..
She was quickly wrapped in a plastic wrap to keep the intestines moist and sterile. She was rushed to the NICU (Neonatal Intensive Care Unit) and was cleaned up, she was intubated and had a OG tube put in to keep her stomach empty and to suction out all of the bile. The Pediatric Surgeon came and put her intestines in a silo, over a period of a week the intestines were slowly pushed in little by little. By the 7th day the intestines were successfully put back into her abdomen and she was taken into the Operating room for her surgery to close up the hole and to put a Broviac line in because she was on TPN ( total parental nutrition) and she was not going to be eating for a while. ( Keep in mind not every gastro baby needs a broviac , but they attempted to put a PICC line in and they didnt succeed so the broviac was the only option.) The surgery was 3 hours long , the longest 3 hours of my life! She was put under anesthesia so when they brought her back up she was still under the anesthesia. The surgery was successfull , they got the hole closed with no problem , no mesh had to be put in to stretch out the skin or anything! =) She couldnt be given anything by mouth so they had to continue with the TPN , she was also on Intralipid which is a fat , Fentanyl which is a narcotic to keep her relaxed and pain free , and also on antibiotics to prevent infection. They had to monitor her to make sure she was having bowel sounds and that she was passing on the meconium, that was also a success she was having bowel sounds and day by day passing the meconium. The finally started her feeds a week after surgery, I was breastfeeding because they said that formula would be too heavy for her stomach so I was pumping and giving them every ounce I got! They started her off with only 5ml and day by day went on to increasing them , as her feeds went up the TPN went down. Ofcourse she was still being monitored so her stomach doesnt get distended (swollen) and that she ofcourse was passing stool. Our little trooper was doing great she was tolerating her feeds and was passing stool several times a day! Her feeds were increasing rapidly and she was finally at her full feeds which according to her weight was 60 mls. She was gaining weight , tolerating her feeds and passing stool , all of which she was suppose to do! She was off her TPN and was put on ADLIB which meant I could finally breastfeed and she could take as much as she wanted! The Neonatologists finally told us we were on our way home the only thing we were waiting for was the surgeon to come remove the broviac. As soon as the broviac was taken out we had to wait a couple of hours to monitor the baby for any signs of infection and if everything went as planned we could take the baby home that day , well everything went according to plan and after a long 5 and a half weeks we got to take our baby home on Feb. 9th 2010!

We are finally home now , and our little miracle is home with us just how we imagined all along , she is doing so well , thank God.
I decided to share my story with all of you because our story was a success and hopefully all of you who have or are expecting a baby with Gastroschisis can have some hope , it is a terrible thing to hear when your baby is going to born with a birth defect but every baby is a miracle and they are so strong they can make it through anything! You have to be strong for your baby it is a long journey to recovery but it is worth every waking second!

A Mothers Story.

• In June 1987 i married my husband and soon after we found out i was pregnant, i was 23years old and very happy and excited. At 20 weeks i had my 1st scan {which i was not allowed to see} the nurse left the room to fetch the ward sister, i was upset not to see my baby and she told me there was a problem with the baby, but not what it was. I had in the next week blood tests {AFP} & amniocentisis {amniotic fluid} taken. At 22weeks we saw a doctor in obstetrics who diagnosed gastroschisis he then proceeded to offer usa termination! No way! He offered help from another hospital 60miles away, this little baby had a chance of life, hooray! We had a luvly lady obstertrician who gave reassurance and we got the chance to see our little baby on the scan for the 1st time at 26 weeks. We had nobody we could talk to about gastroschisis and the doctors were very reluctant to answer any questions or concerns that we had, evan to the point do not prepare a nursery or buy any equipment for the baby. At 30 weeks i had a heamorrage and was taken to the local hospital, very frightening. I was told by the team of doctors that i would have a C-section if the bleeding stopped and the pregnancy progressed, i would not be allowed to go home until the baby was delivered, and they would not transfer me to the other hospital 60miles away where our baby had the best chance of survival. We cried, and cried many tears of frustration. Hope, was a telephone call from our new hospital, yes they helped us and our baby. We did something risky and not for the faint hearted, my wonderful husband had the staff to get me ready, i signed myself OUT of the hospital and he had the car waiting to drive me 60 miles across the county lines where if needed an ambulance would be waiting to take me to the hospital of our choice and in the best interests of our baby.I arrived safely at the hospital and was admitted straight away, arrangements were made that i would be a long stay patient and i was safe. I delivered our son naturally in Jan 1988 and a great team of staff were on hand to help in the delivery, i did not see him or had the chance to cuddle or hold him as the ambulance crew and peadiatric team took him to the childrens hospital straight away. I felt devestated i could not see him but wanted him to have the best chance of life.I was very poorly after delivery and could not settle, my husband was at the childrens hospital intensive care unit waiting to see if he was ok? The surgeons had seen the condition before but our baby was a what they deem to be a bad case, the hole was small, all intestine and bowel outside and the cavity space very small, which pushed his lungs upwards, which resulted in lung collapse! We shed so many tears but he was a little fighter! At 12weeks our son was discharged and he had gained sufficient weight, but we had a problem, no clothes!My late mother came to the rescue with a beautiful outfit and shawl to bring him home. Our family and friends helped with equipment and clothing as we had nothing. The one thing i missed out on was not being able to breast feed as he could not feed for the first 8weeks. We had many problems as our son grew ENT hearing/language/nose polyps and sinus problems, he was also diagnosed with Dyspraxia {balance/co-ordination/learning difficulties} also subsequent abdominal repair/belly button. At 22years of age our son is in his final year at university and living life to the full, there is never a day goes by where we do not feel proud that we gave this lad of ours the chance of life, with much love and support from us his proud parents, our families & friends.

PS We were told after our son was born there was a chance i could go on to have another baby with the same condition, they said they had seen it happen. Now i wonder if that is the case? We decided not to have anymore children.

New to Gastroschisis

Good morning all. I wanted to introduce myself and tell you how scared I am, even though I read a bunch of positive info. My daughter Katie is 22 wks and the baby (a girl)has gastroschisis. They said alot of the intestines were outside but no organs. The baby is super tiny and very very low. The head is already at the cervix. I am fortunate, friends of ours went through this with their granddaughter but she is an extreme case. So far I love this site and am thankful my friend told me about it. I broke down yesterday and cried very hard for about an hour. My prayers are with all of us but I know I need support so I can be there for Katie and my granddaughter to be. They are thinking of the name Hailey.

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