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| I agree with you, I am 30yrs old and was born with gastroschis, I am a survivor, I will never change the way I look, scars are here and I love myself. I am full time mother of 6. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi Megan, I am the creator of the Gastroschisis Support Group, Australia. I'd really love if you would join us and allow me to share your story with others - no baby is exactly the same, and therefore each outcome is different - so it would be great to hear yours & give confidence to the mothers that even when things don't go exactly according to plan that they can still come through with a positive outcome... which have proved with your 16yr old daughter :) You are one strong woman. Email me at: gastroschisismums@hotmail .com Join at: www.gastroschisismiracles .webs.com Hope to hear from you soon. Take care always, April |
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| I was 18 when I had my baby girl who was born with gastrochesis she was born in 1993 and will be 16 in December she was one of the more difficult cases when she was born her intestines that were outside her tummy had died and therefore were unable to be put back in her stomach she was in hospital untill she was 14months old and had numerous operations and a total of 10 broviac lines but now she is a healthy 15 year old and the only medical issue she has is regular b12 injections she had one of the hardest starts to life but you would not believe how healthy she is now this is a story of hope to those parents of babys who are still in hospital 6-8 months down the track there is hope and I really believe that even though these babys intestines do not grow back there bodys adapt and learn to digest foods as they get older and there bodys grow. meganXXX | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi everyone!! Just writing to let you all know I have created a Gastroschisis Support Group for all families affected by this condition! As a new mum who went through the whole ordeal this year I decided there wasnt enough support out there & felt really alone. With all your help we can build a good network of mums/families to lean on each other. so PLEASE, checkout: www.gastroschisismiracles .webs.com become a member and help others in ways that weren't available to you when you were going through it with your babies! :) email me at: gastroschisismums@hotmail .com, if u like. Take care, April |
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| i am disgusted to hear people born with the same condition as me would go ahead n change themselves your scar just proves that u are a survive i should be dead bu im still alive n kickin with some problems now an again which sucks but u should never change ur looks to fit in its silly | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| i cant say i know how you feel cause you would have to ask my mum but being born in the 80s was a whole heap different now chances are rising and having the problems i did and im still here happy healthy if not alittle over weight and a mum which was the worrying thing but just pray at least you have early knowledge when i was born the found out when i come out i was lucky that i was premy as my bowel was still soft so was lucky that they could but everything back in in one go but in saying that my bowel is stuck to the wall of my stomach and they dont know where my appendix are never really had any trouble in my teens but got some plastic surgrey to fix scars as the werent as good back then to now my advice is to look after yourself cause you wont be any good to anyone if your not well need all your strength to help baby rest eat right best wishes xoxox | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hey reading your message made me sit back and think it almost sounded as if i had wriiten your message my self i am 26 and was born three weeks early and had a belly button made for me two i have two children who are healthy wow | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| i am 16 and have had a baby with gastroschisis. i wasn't that scared i have a lot of faith and i had very good support from my mum. the only hospital that delt with these things was far away. mum and i had to stay in the ronald mac house. it was very hard to be away from home. i went in to labour lots of times, i had to be in a wheel chair. i was in and out of hospital and very ill. so i was away from home about 12 weeks including the time my baby was in hospital. he is now 4 months old health and very happy. it was almost one of the hardest things i have ever done and the one thing that helped me through was my support. |
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| well i hAD IT IN MY BELLY BOTTEN AND IM SOPPSED TO BE DEAD BY NOW BUT IM TWELVE SO:P | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| i was in hospital for 6 months and tube feed | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| i was born 3 weeks early and they didnt know what i had untill i was born the drs quick thinking to wrap me in glad wrap and the fact i was born early saved my life. i was told i was one of the first to be lucky i know of one other girl in the usa before me. i was born in 1980. i got a belly button made for me :P | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| i had Gastroschisis and im now almost 29 ive had 2 ops on my tummy because i got cysts i have a few other things wrong with me but it has nothing to do with Gastroschisis i get discomfort from the scar tissue but it's all good. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi My name is Renee, I am a mother of a 4 year old boy name Silas. I was 4 months pregnant with him when I found out he had gastroschisis. I know your scaired, and you feel like its your fault and a million thoughts race through your head. Honestly, Im a med student and it is a miracle to have a healthy baby. I promise to you though, I would not change one thing about that whole experience! Your child will be born with patience and a great desire for life. My son is so sweet and pure.In fact, that was the best memories and moments of my life, were those quiet moments in the NICU rocking him, praying he could just go home with me. This was a true blessing in disguise for me, I hope it is for you to. It makes you truly, with all your heart appreciate every moment you have with your baby, It makes you want to be a better Mother, and never waste time with pointless deeds but make every second matter. Even though Im a full time student, and do clinicals all week and a wife and pregnant, I promised Silas while he was in the hospital I would take him to the park at least once a week and I told him about ice cream and candy and christmas,well, i just talked to him about everything that a waits him. I take him to the park everyday he gets a smiley face in Pre-K and so we go to the park at least 4 times a week.Just remember, this birth defect is cureable, it can be fixed. I ate alot of protein bars, egg whites, veggies and water and cranberry juice. Drink a lot of cranberry juice, i craved it,but its a really good antioxidant that might have helped keep his intestines from getting infected and kept the amniotic fluid clean. He weighed 5 pound 6 ounces. It took them 8 hours to get all his intestines in, which is really good. THe bigger your baby the easier it is for the surgery. Make sure you take your vitamins but dont depend on them. Pray!And say thank you God likes to hear thankyou infact he blessed us with miracle babies, God Bless You and your Miracle. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Id just like to say to anyone who is the hospital with their baby who has gastroschisis or pregnant with a baby with this condition it's probably the scariest thing in the world you will go through but you have to have confidence in your little miricale baby.. My daughter was born with her intestines out in october 2007 and after 1 surgery to put it back in and 1 to insert a central line 4 days in NICU and 2 1/2 months in HDU we took her home. Since then we have discovered a dairy and lactose allergy but she has ben pretty healthy otherwise. Intolerance of feeding seems to be pretty common so if that happens at first don't stress. It's the hardest thing in the world to feel helpless with your child but it is so worth it to believe in the drs. Having that little peice of you taken away straight after birth hurts but remember it's for their best chance at a healthy life, keep you chin up. Trust me it is hard and a nerve racking thing waiting and anticipating the birth and what will happen after but there is no way to make it easier than to research and find out what will happen where you expect to give birth. Give yourself the knowledge, it really helps. If you ever need someone to chat to please dont hesitate to contact me. I had 2 babies at home while i was 5 hours away from them at the hospital so if i can help i'd love to even just to chat. naomimcnaught@hotmail.com naomi |
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| hi,i have just been scrolling through your posts whilst doing a bit of my own research on gastroschisis. i am 27yrs old and was born with gastroschisis. whilst it appears from reading the posts that there are various degrees of severity, i just thought that i'd share my experiences that i have had no problems or complications with my stomach throughout most of my life. i believe when i was younger (pre schoold age) i had frequent stomach upsets but since that time i have not experienced any. i hope this helps. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hi my name is heather dawson and i have a daughter with gastroschisis and me are still at the hospital and she just turned 4 months old she has had 5 surgerys and she has to have at least one more b/c she has an ostomy bag that is where she has a little bag on her side with her intestine in it that is where she goes to the bathroom. She has had so many problems she gets better and then something goes wrong either they block or get twisted or anything that can happen seems like it always does to her. I have a two year old at home and i hate being away from him i just wanted someone to talk to about this and it seems that you had a rough time with it as well i hope that i will hear back from u my e-mail is heatherdawson75@yahoo.com .au thank you i hope that your daughter is doin well | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hi all, thanks for all you responses i gave birth to torah-jane on the 16th august and she went and had her surgery at 1 hour old spent 3 weeks in hosptial she is now 5 months old and is great no other worries she is rolling over and crawling around her scare is about 4 cm long so by the time she is an teenager you wont even see it thanks again for the support. lisa |
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| i was 16 when i was told that my baby would be born with gastroschisis. my doctor didn't know what it was and suggested a abortion and i refused. i was scared did lots of research and stuff had many doctors appountments and unltrasounds, i was litterally going to the doctors 2-3 times a week during my last trimester. then when i finally had her at 38 weeks. i finally gotta know what scared really was. she was the most beautiful thing i ever saw, nut they took her away i didn't get the best look at her. they told me i would have to wait til after they examined her. finally after 1 1/2 hours i gotta hold her for 5 min then they took her away for surgery. i stayed up for 2 days watching and making sure nothing happend, i didn't leave the hospital for 2 1/2 weeks then they made me. she ended up having 6 surgeries before they completly fixed everything. she had some complications along the way some minor and some serious. nut now she's 16 months and healthy i'd keep her. sahe'll be your little miracle. hey if you ever need anyone to talk to e-mail me urlilgurl4@yahoo.com. i have been through alot with my daughter and i can help you get through this. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hello Michelle, I too have been in your exact position and i completely understand your fears for yourself and that of your lovely baby. Please be strong (easier said than done, yes!) and look after yourself as best as you can...Please feel free to email me at neatyt@bigpond.com.au anytime and I would be more than happy to help you in anyway thru this very difficult time. I've been in your exact position and there is no need for you to feel alone in this situation...my kindest regards to you and your family xoxo | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hello Lisa... What a difficult time you are having right now...I truly feel for you and your beautiful baby. Please don't despair (easier said than done, I understand) but I'm sure your baby will be fine. I have been in your exact position, young, pregnant and very very scared. Now, I am the proud Mum of a gorgeous, perfect 12 year old boy whom has weathered the storm that gastroshisis brings (albeit a short tumultuous storm).. If there is anything I can do to help or you need someone to chat or email, please don't hesitate sweetheart...You are not alone. Email me at neatyt@bigpond.com.au...a nytime... Be strong, everything will be okay xoxo |
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| Hi My baby was diagnosed at 13 weeks gestation with gastroschisis. Wow what a scary time that was. It is very stressful and demanding on relationships and you. It is different for everyone and no matter how many stories you hear you will still be worried until your baby has the all clear. Jordan was born by natural delivery but was brought on at 35 weeks as that is what my dr and his dr thought best. there were about 10 - 15 people in the room as i pushed the last push to meet my son for the first time. He was whisked over to a table that was set up and wrapped in cling wrap and blankets. Then I held him for the first time just quickly before he was taken away and I was fixed up. They wheeled me past were he was being operated on and i was told i could not see him. that was hard. i was then taken up to my room which being in a large hospital meant i had to me in a shared room with mothers who had their babies beside them. As soon as Jordan was stable they took me down to see him and the dr explained that they had put his bowel back in mostly by it being gravity fed and them placing it as best they could. He had taken a photo for me, (which if your dr will do get it great keepsake and lets you understand it a bit more)we were in the neonatal icu for about a week where jordan could not eat and we could not hold him. He was then moved to the special care nursery where he was allowed to have his first feed which was about 1 mil of milk gravity thread through a nasal gatric tube, he did not do well with this and there were a few set backs until his tummy got used to haveing it pu in there, but we got through it and we were allowed to hold him for short periods so that was great. We were in hospital for about 1 month 1 week before we got to go home, Jordan has had one more op since then for twisted bowel that was at nine months old, now he is doing great he is 6 yo in grade one happy and healthy and we are all stronger for making it through. chin up think++ ... |
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| hi im michelle from uk im 22 and this is my second baby im now 13 weeks and found out my baby has gastrochisis too, i had my scan but there was no one there who could tell me more so im having a very hard 5 day wiat to hear more please could you tell me how your getting on and what info you've been told if any as im reading throught on the internet and its frightening im very scared. xx | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hiya im kim from uk, i am 15wks now an my baby has gastroschisis too, my pead of fetal med offerd abortion, i refused, just want info an support realy , its juts so worrying not knowing whats going too happen, i geuss its just a waiting game , kim x kimhughes121@yahoo.co.uk email if you want too xxxx | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Please pray for Ally Heintz..a brave little fighhter bron with this condition 3.5 years ago. SHe has just undergone major organ transplant for gastrochisis ans is still fighting. http://allyheintz.aboutmybaby.com/ |
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| try taking some Olive leaf extract & visit a Chinese herbalist &/or Homeopath | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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