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Why is this website here?
This website exists for the same reasons you have or you are about to experience, in our case it was the birth of our daughter Tanisha and our Gastroschisis story which is only 1 of over 107 stories added so far
About Dean
I set this website up in 2007 for those of us who never really had a place to share our experiences about Gastroschisis, since then the website has evolved into what you see now. Read Tanisha's Story I am the one to shout at when things go wrong with this site.
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My son was born with Gastroschisis and has had an amazing recovery, having left Addenbrookes after only 13 days and no real problems other than very slow weight gain in the initial 6 months.
He is now on the 75th centile and 14 months old.
However he has lately started suffering with really bad constipation. This morning he almost screamed the house down trying to pass a stool. he has a reasonably balanced diet, and I try to give him prunes every few days, but he is still in pain at least once a week.
Has anyone else had this problem?
hi every1 i never thought id be able 2 write on here as i havent stopped crying since i found out last week at my 12 week scan,i think ive read all the storys on here at least twice!! my baby is due in december and i have 3 other children 2 think about leaving over xmas time!!ive been thru every emotion possible and im so scared,i went to kings hospital 3 days ago and they told me that its only a small opening with a little bit of bowel and that my baby would only be in hospital for about 2 weeks after delevery,and that i can have a natural birth and not a c section that my midwife told me i would have to have! after reading every1 elses storys on here i seem to get a bit of peace noing that it isnt that bad, i think my main worry is that something else is wrong with my baby and im not sure how im going to cope!! ive always been such a strong person but this has hit me hard that i cant even get dressed some days..
Hey my name is Gemma and I am almost 13. I was born with Gastroschisis and had a 7 day operation in which my bowels where lowered down into my stomach day by day, as I grew big enough for them to fit. Then I had a 1 day operation in which I was stiched up. I stayed in hospital for 3 months exactly, and then had a check up every year. By P4 I had developed a hernia, and had to go into surgery. My belly button, until P4, was nearer my hips. I get pains on my scar daily, but I have gotten used to it. I am aware I am a very lucky survivour and am lucky to live.
Ask me anything!
Gemma
I was born in 1983 with gastroschisis. My parents did not know until I was born that I had the condition, I was took to my nearest childrens hospital that had a specialist that could operate. Over the three months that Iwas in hospital I had numerous operations and at timesnearly did not survive, but here I am 28 years later. I had 3 operations during my teens to tidy up my scars but have had no other problems at all.
My Son was diagnosed with Gastroschisis after a 20 week scan. He was born on Monday 4th July. He was doing so well until he caught an infection yesterday. If anyone else experienced can you please contact me as I am so worried for him. His mum is so strong but I am so weak and can’t even bare to see him!:-(
Hello I am so far the oldest person I know of with Gastroschisis, I know there are older people out there but we are few and far between. I will be 35 this year and wanted to let people know that this isn’t a huge deal. Of course in the beginning it can be very dangerous and the scars can be uncomfortable but so far my life is 100% normal as are most of the people I have met with this condition. I have successfully carried 3 children to term with no major issues or complications at all despite the very large scar. And have had no medical complications resulting from Gastroschisis. Worried parents please know once you get through all the major stuff (which is now VERY VERY survivable) Gastroschisis is just about learning to live with a large scar which burns from time to time, it’s not that bad.
Im 16 and have gastroscisis , over all im doing fine , but the thing that brings my insicurity down a whole lot is tha huge scar on my stomach. I cant wear binkinis to the pool with my friends , or pierce my belly ; cause i have no belly button. I feel uglyy . -__- None of my friends will understand how i feel because , they dont even know wat gastroscis is .
hi my names jasmine,
i also have gastroschisis and i totally know what you mean about the whole insecurity thing it does suck not being able to ware that cute bikini or crop top and have a belly ring but no worries i learned to just worked around it. instead of a bikini rock a monokini they are super adorable and with the right one you can cover up and still look super cute! about the belly ring for me i chose to gage my ears instead not super huge but the right size that will work. all im saying is dont feel ugly because of this condition, yeah there are restrictions but work around it and rock it. p.s. best way to make your friends understand is to inform them. just lay it all out.
hope i was of some help,.
jas:)
Finally somebody my age with the same problem and fears! I am also 16 and have the same issues with not wearing a bikini and i feel horrible, and not self confident at all!! i still do not know how to deal with this..
I am 15 and was born with gastroschisis. I am thankful for being alive today although many other people have not been as lucky.But I am thankful for having been born with gastroschisis because it saved my life…My parents were on vacation in Mexico and I was kidnapped by black market organ dealers and they were going to use mine,but they saw my scar from my gastroschisis surgery and thought something was wrong with me so they turned me back over to the police.But dealing with the scar and the scar tissue is the worst part,especially bc im a teenager and like to go out with my friends and cant always pull off everything they can and if i wear a two piece swimsuit,a lot of questions get asked. I just hope later in life i will be able to have babies and get reconstructive surgery of some kind.
I was 19 when I found out I was having another child, my son almost a year old, and being pregnant was tough, I was scared and nervous. Everyone in my family, and all my friends thought I was having another boy, I really wanted a girl. There was a problem with my insurance and didn’t get an ultrasound until June 18, 2009. At first the Dr. Told me I was having a boy, then a 4th look, ‘he’ turned out to be a ‘she’ then he told me something was wrong with the baby, I was already 6 months pregnant, I started to get really scared. The Dr. Made me an appointment to another hospital in a week, so later that afternoon I called my mom and dad up and told them the news, I told them that they were going to have a granddaughter who will be born on September 5,2009, and that something was wrong with her bowels, my dad told me everything will be okay, and he promised to be there for us. Around 8 that night, he passed away from a bad heart/liver from his medication, 2 days later I turned 20 and spent the whole day crying for my loss, and crying because of my unborn child. I didn’t know what to expect.
The next week the hospital canceled my appointment, they made another, again they cancelled, I tried calling other places, they needed a verification from my Dr. Which he never approved. So finally 2 weeks before she was born, I went to the emergency room because I wanted to know what was wrong, they transferred me by ambulance, and I was all alone hours away from my boyfriend and son. They did an emergency C-section On august 31, 200o at 3:44 pm. She was born at 6lb 4.2 oz, at 18 1/2 inches. Her cord was wrapped around her neck 3 times, and her left lung collapsed right after birth, they took her away so fast. I felt my dad with me, I didn’t feel alone. I didn’t get a chance to see her for 2 days. I cried. I wanted my baby. When I saw her for the first time, I fell in love. She is my miracle baby. I named her Kaylee Fae. She was kept sedated for 2 weeks, with tubes down her nose and throat, IV’s in her arm. She looked so helpless. The nurses and Drs loved her so much they didn’t want to see her go 3 weeks later. Now she is almost 2, and there has been no complications or hospitalizations at all! My dad kept his promise, he is with us every day, and everyday I am proud that this little girl is mine! thank you for reading my family’s story
well i was born in 1995 and im 16. from reading everyone elses storys im very thankful that my gastroschisis was very minor… the only scar i have is my belly button itself. it looks extremely different. i get made fun of all the time for it but i mean gotta deal with it. its highschool, it happens. i just got my belly buton pierced yesturday too. but it just made my belly button look bigger, but once its healed i can get the bigger and more dangily ones to hopefully make it look smaller. im hoping i wont have problems with having children though… reading some of these storys has got me worrying a little…
oh my god me too my scar is bigger,so i cant get it pierced,but im so scared about the never having kids thing…
oh my god me too my scar is bigger,so i cant get it pierced,but im so scared about the never having kids thing…
Hiya! Don’t worry about the having children thing, I had a check up eariler this month and I asked about it because I was worried too. My doctor says it should’nt destrup having kids
My daughter was born with gastroschisis. She is doing well now, but it is a constant worry that she will develop adhesions or obstructions because of the intense surgery she endured. She has malabsorption and is very small for her age. Sometimes I think that the surgeon made a mistake putting her bowel in too soon after she was born and leaving it in to get infected, but I know that we are all human and he made the best judgement call based on what he could see. To all of you out there worried about what your friends think and sad because you cannot pierce your bellybutton….GET OVER IT….Get real friends and please stop worrying about getting a piercing that you are probably going to regret in the future. Cherish your body and others will too.
I found out at my 20 week ultrasound that my baby had gastroschisis. I thought it was the end of the world. I’m now 30 weeks&3days. I do still worry about my unborn baby, because no one knows how things will work out until after she is born. There are so many possibilities. I do try my best to think positively.
hey my name is courtney and im 20 yrs old and i found out yesterday that my baby has gastroschisis and will have to have surgery after its born…im really scared this is myfirst baby and im 21 weeks
sure id like to add u,but i dont know ur last name…:)
sure id like to add u,but i dont know ur last name…:)
I am 24 and found out at my 12 week ultrasound that my baby has gastroschisis. I was so scared and in total shock at first as id never even heard of this condition before. As time has gone on i have spoke to lots of people with similar stories and done lots of research and come to terms with it and had started to enjoy my pregnancy again. 3 weeks ago at my 22 week scan i found out that my baby was measuring small, in the 5th centile and was told it could be one of 3 things- its a small baby, the placenta isnt working well or she might have a chromosome disorder. Straight away you think the worst but i still had hope she was just tiny! Yesterday i had another scan and was told by the specialist that she thought she could see a tiny hole in the babies heart but couldnt be 100% sure, however this would increase the risk that she has downs.
I know that gastro is not connected with any other chromosome problems but i was just wondering if anyone else has any similar stories where thier baby was measuring small and had positive outcomes. Im so frightened that i now have this to worry about ontop of everything else and the only way to know for sure is to have an amniocentesis.
any comments would be appreciated!
Thanks, leanne
I’m 19 years old, 27 weeks pregnant.. and it’s a baby boy.. he was diagnosed that he has a gastorschisis last November 26, and I cried really hard when the Dr. said that his chance of survival is very small.. After my ultrasound, I had a research about that case.. it really scares me,.. I’m from Philippines and I haven’t heard any cases of gastroschisis before.. I don’t know where I could find some Dr. that specializes that case.. I really want to keep my child.. please help me guys.. what should I do? Is there somenthing that I should avoid? My expected delivery date is on Feb 29, 2012.. and i hope that he will be safe.. and healthy.. please pray for my babies safety..
I’m 19 years old, 27 weeks pregnant.. and it’s a baby boy.. he was diagnosed that he has a gastorschisis last November 26, and I cried really hard when the Dr. said that his chance of survival is very small.. After my ultrasound, I had a research about that case.. it really scares me,.. I’m from Philippines and I haven’t heard any cases of gastroschisis before.. I don’t know where I could find some Dr. that specializes that case.. I really want to keep my child.. please help me guys.. what should I do? Is there somenthing that I should avoid? My expected delivery date is on Feb 29, 2012.. and i hope that he will be safe.. and healthy.. please pray for my babies safety..
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Hello, My daughter was born with gastroschisis. We are an army family and were living in Germany when she was born, we were offered to come to the UK to Great Ormond St but opted to stay at the specialized Kinder Kilnic located in Krefeld Germany. They had surgeons there from all over the world of the best standards! It was heart breaking seeing her with wires, tubes and a cocktail of nine drugs, she weighed 4lbs, so tiny! 4 Months after her birth she had to have an addition op for a hernia but six years on she is perfect to me!
I do however have some concerns, she was signed off the doctors list for check-ups etc and now she is having toilet related issues (bed wetting), she is complaining about her tummy hurting also. I know that she had her stomach, intestines, bowel and an ovary outside of her body, would this lead to any complications later in life for her? Should i see my GP for a check-up for her?
I dont really know what to do as my regular doctor doesn’t seem to be very helpful…. any help or suggestions from anyone with or associated with gastroschisis would be hugely appreciated
My name is Beth and i am 14. I was born with gastroschisis in 1997 and am lucky to be alive. My condition as a baby was terrible but thankfully I pulled through. When I go swimming with my friends, they always wonder why I don’t seem to mind wearing 2-piece swimming costumes. In my opinion, my scars (two, going across my waistline, from one side to the other across my stomach) are battle scars, and represent the battle I fought as a baby. The battle for my life. My “condition” made me who I am, because I used to be bullied about my scars and lack of belly button, but the teasing just made me stronger as a person. People always suggest that I have surgery to hide my scars, but I don’t want to look “normal” just because some people don’t like the way I look. If anyone my age needs some help or have any questions, or if anyone wants to talk about their stort, email me at bethdevine1@msn.com. Love, the future mrs beth styles ( harry styles from one direction )
I’m Charmaine and I’m 19, currently 24 weeks pregnant with my first.
It was at the 18th week ultra sound that they discovered something was not right and then referred me too a bigger hospital in the city.. Brisbane city australia.
That’s where they told me she has gastrochisis.
Since then I have been having ultra sounds every 3 weeks to check her progress.
So far she is doing well and there plan is to induce me on week 37.
It’s good to see on this website there’s others going through this too
Plz feel free to add me on Facebook .. I can’t seem to understand this website on my phone.
Name : Charmaine Hogan
Hello I’m 20 years old an 24 weeks Pregnant, I was born with gastroschisis (year 1991).
Once I got into my teens I started having Very bad stomach pains, lost my job as well..
so I started going to Doctors to see what the problem was, they found out my insides were turned/twisted/backwards (was told different things)
plus my bowels are twisted/ was told everytime I ate my insides twisted an they was afraid that I was going to end up getting gang green
They wanted to do a emergency surgery but I ended up losing my insurance an Somehow I ended up being healed out of nowhere.
So I tried to get help to get insurance.. but no help.. then I ended up getting Pregnant and I letted my OB know my storie,
he sent me back to the Hospital that I was sent to when I was born because of the gastroschisis, and they seemed to just blow me off,
they let me know my baby is a VERY healthly little guy.. and everything was looking good, so I turned an asked about myself and why was I hurting,
why was I told about my stomach being the way it was.. an once I lost insurance how did I just get healed out of nowhere?
They told me everything looked like it was working fine no blockages, so I asked again then why am I hurting?
And they just told me I would just have to live with the pain, an I was like that doesn’t seem right.. so they said I’ll just have
to get another doctor (same ones I did go to) to see what we could do, but I would have to wait until I had my son..
But I made it clear that once he was born I would lose my Insurances.. so I would just be in the same boat.. as I was before I got pregnant,
Just doesn’t make any sense to me.. and it feels unfair.. how can I live my life with pain?..
I wish no one would have to go threw this.. But I’m glad my son is heathly and I can’t wait to hold him.
I’m glad someone made a Website for people with gastroschisis could tell their storys..
If anyone would like to add me on Facebook.com look under Kay Duley http://facebook.com/Kayy0.0