iam 16 expecting a baby with my boyfriend james, iam 14weeks i found out on the 9th that our baby has gastroschisis we’d like to now abit more about it because iv been told it has a high chance of downs:( i would like to know how long it will be in special care for after i give birth too please?”/ we’d realy apriciate any info that you could share, thankyou:)
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
Originally posted by ClaireLouise
I am 19 years old and pregnant with my first baby. I found out just a week ago at my big scan that it has gastroschisis and possibly a cleft lip. Like anyone would be, I was shocked and upset to find this out and have done nothing but worry since. I have loads of support from all my family and my partner but I cant help but think about it all the time and wonder if it was something I have done during the pregnancy that caused this. I know there is a big chance that my baby will be okay after the operation but I feel that a huge part of having a baby has been taken away from me. I won’t get to hold my baby whenever I want or feed it or changes its nappy. I know the most important thing is that my baby gets better and that I have to be strong but I’m finding it hard to cope sometimes.
Posted by linzi1802 | Posted in Birth Stories | Posted on 08-03-2010
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 .
