Gastroschisis(gas.tros.chi.sis) Support and Resources

my granddaughter was born with gastroschisis.on 09/09/06 she is 3 now and it was a hard path my son was 16 his girlfriend was 16 and i was 33 at the time and never heard of gastroschisis my suggestion to anyone looking for anwsers is not look online!! i went to the library and read medical texts hard but worth it dictionarys are good for medical terminaology.alasey had alot of complications they put her small large intestines in her kidney and overy all in without a silo without stretching first her bowels started dieing in small sections infections and her bowel started leaking into her stomach when she was born she had a 70percent chance at living slowly it went down to 5% it was hard daily to watch this little person die she had suction tpn lipids and it was hard life support at times and before she was 6 months old she had 5 major operations to repair her by the time she was 7months old she was released with suction, tpn, lipids, stoma, g-tube,eliostimie,gugiostimy sorry about the spelling not sure if its correct but it was alot and we her family did it all at home my kids being kids did just what teenagers would do tried to ignore the problem at 2 and many hospital stays and a few years of fear my mizz alasey is threw with it all.a few weeks ago she had minor problems another operation due to scar tissue other then that she is perfect so parents grandparents it will be ok babys and i always thought that she did pass away that at least i got to be with her for a small time and thanked god for allowing me to be apart of her life even if it was for a moment.she changed my life alot and would of never been the same had i not known her.so be grateful love them as much as you can for whatever the time they are here and never feel sorry for them or youself cause they dont ever show self pitty only strenghth.thats all thank you for your time and remember god does give us strenght in our time of need i was not a big believer befor alasey i can tell you i am a big believer today even if she wasnt here i would have comfort in knowing she was with him my mom my dad and my family waiting for me

I found out on 25.04.09 I was expecting with my boyfriend Craig. I didn’t plan the pregnancy but we were both happy with the news. Ii went for my 12 week scan and they said my baby had a hole above his cord and some of his bowel was outside his stomach, they advised me this could go back in within the week, I went back for another scan a week later and the bowel was still out. they told me my baby had gastroschisis. a problem where there is a hole where the cord has not healed and allowed the bowel to come out. i was devastated, read up on the internet which was the worst thing to do because you hear of all the bad horror stories which upset you more. i was scanned every 4 weeks up to birth to monitor the bowels and make sure it was not dilated or swollen. i was told i needed to be induced at 37 weeks. at 38 weeks i was taken into hospital to be induced on 17th December 2009. 32 hours later on 19.12.09 at 23.11 my beautiful little boy was born at 6 pound, 6 ounces. he was taken away to n.i.c.u straight away after a two second hold. i visited him in n.i.c.u at 3.30am and fell in love with him. i was heart broken when i went back to the maternity ward without my little boy, hearing the other babies cry. it was extremely hard to deal with. i didn’t sleep the whole night wanting the morning to hurry so my boyfriend could wheel me to see lewis again. on 23rd December the bag came off his bowel in front of my eyes because he was wriggling so much. i couldn’t believe it. the next day, Christmas eve, the nurse told me he had a life threatening infection and needed to be operated on as soon as possible. they was not sure to operate due to the infection but later decided he needed to be. he was taken to theatre at 8.30pm to have a surgical silo fitted to prevent it coming off again, this is a silo specially made for lewis and sewed under his skin where the hole is. they told me the operation shouldn’t take any longer than two hours and that they would let me know as soon as he was back on the ward. i walked down with him when they took him to theatre and cried wondering if this was the last time i would see my baby alive. for the next two hours i was like a zombie i didn’t know what to do, i just sat and stared at the clock, the longer i stared the longer the time took to pass but i didn’t know what else to do. at 11pm i was out of my mind ringing his ward every two minutes to see if he was there but still no sign, i thought the worst. at 11.15pm i got a phone call saying he was back on the ward and he was fine. i went straight to see him. when i walked on his ward i expected him to be lay there with another bag on and on a ventilator. when i saw him it was like seeing a completely different baby.  the baby that was taken away to theatre was a poorly, ill baby with a life threatening infection. but this baby was amazing, his bowel was completely back inside, he wasn’t on a ventilator, he just had wires as always and a big plaster on his belly. i couldn’t believe my eyes, i just burst out crying with happiness. i stayed with him as Christmas day came along and was able to hold him for the first time properly. when Craig asked to hold him i didn’t want to let him go. he was soon moved to the high dependency unit where he went into a normal cot. i saw him every single day no matter what.  it was extremely hard to leave him each night and watch a different nurse every day change his nappy and clean his face and do everything that i should be doing.  at the time i hated it but when i think about it they was doing there job and looking after my baby. he soon started on milk, starting on 1ml an hour. the day he started he was being sick every time as his stomach was not tolerating the milk. they had to stop and restart again. the next day he was off to a flying start. tolerating the 1ml an hour he went up 1ml each . when he got up to his daily limit of fluids which was 19ml/hour he came off his TPN (feeding fluid) each time his milk went up 1ml his TPN went down 1ml. he then went to 2 hourly feeds. his first day on 2 hourly feeds didn’t go too well he was projectile vomiting every feed. and had to go back to hourly. it was such a long process waiting for him to tolerate his feeds and i was getting so fed up of the nurses saying he will get there soon because it seemed like he never would and he would be in hospital forever. when he eventually got to 4 hourly feeds and close to coming home i was told he could come home when i had him overnight at the hospital in my own room without any nurses. he stayed with me for 2 nights and i was told he could come home the next day if he had put enough weight on due to his sickness. he was taken back to the ward that night to have his broviac line removed which sounded like torture and i just wanted them to leave him alone. as soon as it was out i took him to my room and cuddled him til he fell asleep.  the next day i sent Craig to the car to get his pram and car seat. then i was told he might not be able to go home if he hasn’t put enough weight on.  after waiting for the nurses to weigh him he had put enough on to come home. i couldn’t wait to get him in his coat and car seat and get him away from that place. i started to hate the hospital because of it. me and Craig then had to do a resus course in case of any problems at home. and spent 3 hours waiting for his vitamins on prescription. eventually they came to the room and said he an go. i got him in his coat which was massive on him. put him in his car seat and pram and pushed him out of the ward. the nurse took us to the front door and said goodbye. i walked out the door with just me, Craig and lewis. i never felt so scared in my life. id been waiting 6 long weeks to take my baby home and now i was on my way i was so nervous to be on my own. i soon got used to it and so did lewis. i cant even go to the shops without him now. hes been home 5 weeks now and still has the odd sick every now and again. the only problem he has now is trying to poo. he still cant do it on his own and has to have a washout every 2-3 days. the nurse still comes to see him every week, im just waiting for the day he can poo on his own every time. he will get there eventually. hes come this far and i am so proud of him. he is the most bravest little person iv ever met. he fought and fought every day to get home and now wakes up every morning with a big smile on his face. considering all hes been through i have never known a baby to smile as much as he does. my advice to mothers about to go through this or currently going through is not to give up. to me when he was in hospital and i was at home i felt like i didn’t have a baby, i felt like id had a stillbirth and id gone through pregnancy and birth with nothing to show for it. but you will get there, be strong for your little baby and they will be strong for you. you will get there in the end just have patience and trust. do as much as you can for your baby like change nappies and bath them and hold them as much as you can. its a horrible thing to go through, the longest nightmare of my life is now over and we haven’t looked back since hes been home. we have both forgotten about n.i.c.u but il never forget what the did for us all and how they saved my baby’s life.

my name is claire i am 31 and at my 12 week scan the doctor told us that our baby had an exomphalus we were advised to have a cvs after several attempts this could not be done and returned at sixteen weeks for an amnio where the doctor told us that our baby had gastrschisis he did the amnio anyway wich has come back with clear results . I am quite confused about it all and would like some advice i am from oxford and will deliver my baby at the john radcliffe haspital .

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!

• 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.