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Archive for May, 2008

31
May

Matthew

Hello my name is Gaby. When I was about 18 weeks pregnant my AFP test came back elevated. I remember getting the phone call that something was not right. I remember sitting in my bed crying and hysterically called my husband and told him that somthing was wrong with our baby.

I had to wait 4 days, which felt like forever to see the specialist. As we sat at the dr’s office waiting to be seen, I just sat there holding his hand hoping that everything was going to be alright. My husband tried to reassure me that nothing was wrong. As we got called in I felt so scared and so helpless. They counseled us before they actually performed the ultrasound, which was even scarrier. As they performed the Ultrasound, I laid there hoping that everything would be ok, but as he said the words to us,” Let me tell you what I’m seeing…” I knew it everything was not ok.

There would begin a long journey. He told us what Gastroschisis was, but tried to reassure us that if you were going to have a birth defect, this was the best one to have.

I remember crying at the Dr’s office, this was not fair at all. I remember thinking that there are so many people that have abortions and don’t want their kids and here I am who would do anything for my kids, and now my son would be born with Gastroshcisis, it just didn’t seem fair, why me? The whole joy of my pregnancy was robbed, and it just became a constant worry.

On Feb 13. 2008 Matthew was born. He weight 5 lbs. 9oz. He was born at 38 weeks. I could not see him until the next day, but he had surgery a couple hours after he was born and he did infact need a silo. It was a very hard time for me. Who wants to see their son/duaghter go through surgery right after birth. A week later all the bowel was in they did surgery for the closure. After that it was just a waiting game. Day by day the medicines came out, the oxygen came off, and the feedings went up.

Matthew did have a set back at the hospital, but 8 weeks after he was born he was released. He is now 3 months and a half and is such a good, happy, and healthy baby. It was a very hard time for us to go through, but it made us stronger.

I don’t know why it happened, but God does everything for a reason. Matthew is growing day by day. He is such a strong baby. Anyone who would see him could not imagine what he went through. He does have a small scar on his stomach, but I’m sure he is going to be telling his story to many people during his lifetime and has the proof. Anyone reading this who is going through somthing like this, just know that there is hope, gastroschisis babies are miracle babies, they are so strong, they will put up a fight to be here with us. They are truly a blessing!

31
May

yey!

i am excited to find other people with gastroschisis! i am 25 years old and was born with gastroschisis. i have never met another person who had it or even knew what it was. i live in tennessee and most doctors here have never even had a case of it! i have many questions about living with it. as far as i know i have never had any complications since birth, but i’m not sure. i recently recieved health insurance again, i just have to find a gastrointestinal specialist that will accept it.

my boyfriend and i were discussing the matter and he gave me the idea to look it up on the internet and walla! i get the impression after reading about it that the doctors that fixed me up as a baby may not have known exactly what they were doing. i am concerned with that now. so, if there’s anyone who’s lived with this their whole life who has any advice, i would love to hear from you!

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29
May

ash

i am 19 and only 20 weeks pregnant with my 1st baby. i found out in my 18wk scan my little boy has gastroschisis an i am so worried it was good to read all your stories an helped me understand a little more whats could happen and what to expect. my midwifes been through the same situation with her twins an there healthy babies now so having her experienced support helps to.

i am waiting on the hospital to contact me about the next stages, scans etc and let me know how serious it is, but if you know what hospitals are like i could be waiting a while which frustrates me because i just want know how my little soldiers gonna be! good luck to all you and your bubbies

xxx ash

28
May

Global Gastroschisis

World TranslationThe Gastroschisis condition is and never has been confined to one particular country, even from the early days of the website going live i had noticed visitors from several countries from the Phillipines to Japan and many more. With that in mind it had always been my intention to provide a way for non English speaking users a way to read the website in their native tongue, i have searched high and low for a capable application to handle an instant translation and thanks to N2H i can now offer that translation service for all those parents that struggle to read English.

Although the translations given are not exactly precise or grammatically correct, what it does offer is an effort in trying to get the message across to as many people as possible and i personally think that can only be a good thing. Right now there are 23 languages to choose from and it is as simple as clicking on the flag of your country (available at the top right of this page) and from then on whichever page you visit within this website will always be in the language of your choice.

If you feel that there are yet more improvements i could make to this website, don`t be afraid to ask no matter how vague the request is i take all comments seriously enough and i will honour every question with an answer.

Dean

25
May

my little girl born with gastroschisis

We found out when i was about 5 months pregnant that my little girl had gastroschisis. i was really worried as i didnt know what it was but the more i read about it the better i understood.they told me she would be smaller than average. i had regular scans to see how she was doing.

She came at 37 weeks as i was induced when she was born i seen her for like a second before she was taken away from us. it felt like hours before we got to see her. she was in icu for a week then transferred to the normal baby unit. which was a big relief as it was one step closer to getting her home. she was in hospital for 3 weeks. we had regular hospital appointments til she was 1 and a half when she finally got discharged. she is now 5 years old and we havent looked back.

she is in fact above average for her height and her weight is average. shes got a little scar where her belly button would`ve been, but had no other problems since the day we took her home from the hospital. just to let people know that there is in fact light at the end of the tunnel.

24
May

Seeking Advice

Greetings,

I am currently 25 weeks pregnant and have found the information and posts on this site very informative and helpful. I am happy that this site exists and my thanks go to those who created and maintain this invaluable resource.

At a recent ultrasound measurements were taken of my daughter and I was very worried to learn that she was only in the 3rd percentile for her gestational age. The doctors indicated that they would perform another ultrasound in three weeks to measure our daughter’s growth. They said that if, at that time, she is still under the 10th percentile, the term Fetal Growth Restriction would be applied to this pregnancy and they would begin twice weekly ultrasound monitoring. I was wondering whether any other parents of babies with gastroschisis have had a similar experience? Also, what is the typical birth weight for a baby with this condition?

At this same visit, we were given the opportunity to visit the NICU (neonatal intensive care unit) in order to see where our daughter would be cared for. We also met with the pediatric surgeon. While we were grateful for the opportunity, it was very difficult for us to imagine our daughter stuck in a hospital with tubes and wires everywhere. I wonder if anyone who has already gone through this experience can offer advice on how to deal with this very difficult situation? Also, we have a 17 month old daughter at home and we are both very concerned about how to manage spreading our time between the hospital and still maintaining a sense of normalcy for our oldest daughter.

We appreciate any suggestions you might have.

Warmest Regards,

Ashley & Devlin

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22
May

Millie

We discovered that our precious little girl and Gastochisis on our 12week scan, and as like most of you spent the next few months constantly worrying about what lied ahead for us. We were closely monitered by monthly scans, followed by weekly as our due date approached.

Millie decided to make a early arrival and was born 5 weeks early weighing in at 5lbs 9oz and she was then whisked away to SCBU as soon as she was born, it just didnt feel real whilst I was still in the delivery room, our little angel was lying on an operating table with her life in the hands of the surgeons.

We finally got to see her when she was 3hrs old, only to be told that the operation was not a sucsess and further surgery was needed, as the opening where Millies bowel was had started to close over and had almost closed and it had survived by one tiny blood vessel keeping it alive, so Millies bowel was all inside but not conected to anything, so from the outside Millie looked like a normal baby, but nobody knew what was actually going on inside, we then spent an agonising 6 weeks just waiting for her next op to find out if any of her bowel had mended itself and survived.

Thankfully Millie came back from her 2nd surgery and all her bowel was all ok and as soon as she got over the surgery and all had settled down she could finally start having some milk which seemed like forever that we had waited for this day, Millie was 8weeks old , She tolerated milk well and gradually increased over the next few weeks and finally her bowel was working well, and at 11 weeks old we could bring her home.

She turned 1yr old last week, and what a yr, Millie is still very small for her age, she still gets weighed weekly to keep a close eye on her, she eats well, but she has difficulty absorbing all the nutrients from her food due to the damage from the bowel being on the outside, but we are told that it is something that she will grow out of, as she grows her bowel will grow, but to look at her you would never think what she has been through to get where she is now.

I hope my story has given some of you some inspiration, and I would be happy to hear from anyone.

Emma (U.K)

19
May

I was a gastrochisis baby

All I can say is wow! I never knew so many people suffered from this I was born in September 1966 full term 2 lbs 8 ozs. what they called it at the time a severe gastric hernia. I spent 2 months in in prenatal intensive care had my heart stopped 3 times and still made it.

Well I’m 41 have 2 beautiful kids now 20 and 11 and my case I didn’t have any covering (skin) over my umbilical area so I never had the normal belly button just a crater and yes it was hard to deal with as a child but I had a great supportive grandmother.

Any way when I had my son in 1997 I found out that my small intestines were sewn to my abdominal wall which I was never to have leiposcopic surgery . which was fine because it would perforate my intestines and I would die. O k I could remember that. And told my care giver in the future.

Well, about a month ago I had severe pain in my right lower side thinking I’m having an appendicitis. well surprise it wasn’t . I had 3 small bowl obstructions due to scare tissue . And well also found out that my appendix wasn’t even in the right spot. matter of fact my whole small and large intestines were not text book laid out. that explains a lot of bad gas pains as a child.

Well back then you didn’t have specialist for every thing my mother told me and they didn’t use mesh and such like they do now. and when I was developing in the womb my intestines grew out not up like normal.

So it’s a 100% mortality rate for obstructed bowl after 36 hours I’m starting to feel like a cat with 9 live here. but now every thing is fine and more battle scars to add to my collection. but it could happen again any time. I was told.

By the way, there were 3 cases that was reported at the same time that year, I was the worst case. The environmental people did investigate and asked my mom a whole bunch of questions, all of course were not the cause. so. to those mom’s out there yes your children will be fine just delicate little fighters. and will live a normal life.

Kathy

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16
May

MY TWINS

Finding out your expecting twins is a big shock in its self but finding out one of them has Gastroschisis was a lot to take in on my first scan.

I had my amazing girls at 36 weeks chloe was fine but amber was taken straight away to be operated on my partner and mum got to meet amber b4 the operation but i was too ill.

That night amber was left with 36 cm of bowel and had to survive on her PN it was two weeks b4 she could try milk this was 1ml every 2 hours it took along time for her to tolerate this but she never gave up. Unfortunately she developed liver disease and the only way to correct it in time was to get her to tolerate more milk she suprised us all and to this day her liver is fine

Amber spent 4 months in hospital b4 she could come home on her PN since then she has been back and forward to hospital with infections and experiments to get her off her PN but she is not ready just yet.

Amber and chloe are now 21 months their is a big difference in their height and weight but Amber makes up for that with her cheeky little ways Amber is going for tests next week to see if their is any more the medical team can do for her. we have been told so many times she wouldn’t make it, it just goes to show no matter how ill your child is if you don’t give up they will do their best.

I would love to hear from anyone who has had Gastroschisis in their family.

8
May

my poor lil girl

hi, i have a little girl called Ebony leigh, she was born with gastroschisis. after she was born they put a silo on around her bowels for a week then she had her operation which was a succsess. My daughter is now seven weeks old and still in SCBU.

She just wont tolerate her milk and is only on 1ml every 2 hours and her TPN to keep her nutrients up. It just seems every one who i have read about or spoke to with babies that have the same condition have only been in a few weeks. Its really fustrating i just feel like im missing out on her. I was just wondering if anyone else felt the same way it would be really good to hear a reply
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