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Archive for January, 2009

28
Jan

Alexandria Born 12/12/08

Story Author and submitted by: chyrstalshiverdecker

My daughter was born c-section(personal choice) at 37 weeks. Part of her bowel had died in the transfer to another hospital over 2 1/2 hours away but it eventually started to come back to life as they placed her intestines in a silo for 7 days and had her surgery on the seventh say. we are going on 7 weeks now in the NICU and she handing her feed really well now and we hope to have her home soon! Her belly looks great! they gave her a bellybotton during surgery and if you look at her now you never would of know she was born with a condition. I’m so proud of her. Please e-mail me if you have any questions or would like to see pics. Talking to other mothers really helped prepare me for what was to come. I would be glad to give words of experience if it is needed but I still have a lot to learn.

28
Jan

ordinary boy….

hey all,

my name is James Taylor and i was born with Gastroschisis.
i was born very small and did not weigh much, but i had a loving family around me who helped me pull through.

i am now 14 years old and i’m not going to lie, it hasn’t been easy, but the whole experience has made me so much stronger and determined.

i am now a very successful swimmer, and would consider myself to be very healthy (health freak you could say)

this is a message for all young family’s like my mother and father were.

it may seem bad in the beginning, but children are stronger then you think.

i am now your ordinary 5ft 11, 10 stone boy.

there is almost no sign of my ops. and my life has almost no sign of gastroschisis
it all seems a far gone dream……
but one i will never forget…..
one that has built my character and gave me much respect for my mum and dad, looking back at how they backed me up all the way.

hope this has helped some nervious family’s

19
Jan

Mikka born on 12/01/2009 with Gastroschisis

Our daughter was born on 12th january at 38 weeks, vaginal delivery and making a grand entrance in approx 6-8 minutes. She weighed 5lb 8oz. She is 6 days old today and had her operation 3 days ago. She is now off of the morphine and only has paracetomol as and when needed. She is opening her bowels and all appears to be working fine, they hope to introduce her to milk tomorrow. We had our first cuddles today and she is great.

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15
Jan

My little Angel was born July 24 "08"

My little girl was born one month early from her due date. I knew of her gastroschisis issue at around eight weeks. I was told that it is a rare case but the surivial rate is normally 100%. my baby has been in the hospital for six months. My baby has already had four surgeries and now has a feeding intolreance which is bad because she needs to be off the TPN fluids.I am very upset because it has been a long time and I want my baby home. Her bowel was dilated and narrow in certain areas when she was born so that was the cause of her stay in the hopital at first.

Before she was able to feed from the bottle but now she has to feed from both the NG tube and the bottle because of her feeding intolerance. Is anyone else going through this? Please let me know your outcome if your case was similar.

15
Jan

Having "belly buttons" made as an adult!

Hi all,

I thought readers of this site might be interested in my story about plastic surgery to give a ‘bellybutton’.

I was born with Gastroschisis in 1979. As a child I was extremely self-conscious of the scar that went from side to side and made my belly look like a smiley face!

So at 12 years of age I had plastic surgery to get a belly button created.

From what I understand, they basically folded in unscarred skin over my prominent scar (that still showed stitch holes!) and used invisible stitches, and formed a belly button shape.

The stitches either side of the ‘belly button’ got infected because I was sent home from hospital too soon, and I remember applying bandages and cream to the infections for weeks.  I actually missed the first ~3 months of high school for this operation, as I couldn’t walk for a while (too much downwards pressure on the belly).

I was always very shy about my body and scar, and felt completely abnormal.  I strongly believe that if I didn’t have this plastic surgery done, I would have had a more difficult time with close relationships.  I am self-conscious as it is, and having a fake bellybutton makes me a little less sensitive about my scar but I am still shy in that regard.

As an adult, I’ve become overweight.  I notice (and remember it being the case at age 12) that fat has always gathered around my middle quite obviously above the scar.  I assume this is because there’s less ‘stretch’ in the scar region.  I’d be interested to know if others are the same. Being overweight with a fake belly button, really makes me shy!   :)

I’ve also got fertility issues but that’s a whole other post!

I’m so glad to have found this site, it’s amazing how little information there is about long-term effects of this condition seeing there’s like 1 in 5000 babies with it.

Cheers,

Kate

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13
Jan

Fertility issues

Hi All! I was born January of 1983 with Gastrochisis and am now having problems getting pregnant. I have never had a regular period but was told that is not big deal. Is anyone else having issues?

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12
Jan

Lot's of Questions, please answer!!

I wanted to know how many have had vaginal births?

Those who had c-sections was it scheduled or was it emergency?

How far along was everyone when they delivered?

And how long was your stay at the hospital with your baby?

Have any had more then one child with gastroschisis?

I would really appreciate anyone who can help with these questions, thanks so much.

Mica

11
Jan

Hi all

Well I am a long time lurker to this site so I decided to post something. I like many of you was born with gastroschisis. I have to admit times can be hard but oddly enough I feel this gives me some kind of advantage, you see the thing is with all the problems I have had in my life I feel I have an unique perspective on things which makes me ideal for the art industry. I have recently enrolled in a foundation art course. Don’t get me wrong it is a struggle and some days I can barely get out of bed but on a good day it feels almost like magic.

I feel it is important to lay mention that I have had a fantastic support network of friends, work colleagues and family. They inspire me to be as great as I can be.

I do get the feeling like I don’t fit in sometimes as I am the only person with a ng tube im my college but everybody tries to treat me as normal as possible so it’s ok I guess. Well thanks for listening I may post more stuff here and become a regular.

10
Jan

Gastroschisis Baby

Hi, hopefully this will give hope and a positive outlook to anyone who is expecting a baby with Gastroschisis.

When my husband and I where told we where expecting a baby with Gastroschisis (2008), our world fell apart. We thought we where going to have a child with a permanent illness, who would not be able to digest food properly and never be a “normal” child. We couldn’t of been further away from the truth.

Throughout my pregnancy I was told I wouldn’t make it past 32 weeks (Gastroschisis pregnancies never normally go full term). I was offered a termination twice at our local hospital. I now feel angry and wonder why this was the case since understanding what the condition is and seeing how perfectly normal my daughter is today. I was scanned every 2 weeks at my local hospital, where they checked my baby’s size and my amniotic fluid levels. I was then referred to Kings College Hospital London, where I was again scanned every 2 weeks and was finally induced at 38 weeks. Our daughter was born 12 hours after being induced and weighted a tiny 4lb (Don’t worry not all Gastroschisis babies are this small). I had a normal delivery.

Here’s a quick summary of our experience so you know what to expect:

Our baby was taken immediately after birth, her bowel was firstly wrapped to her in cling film and by the time we got to see her (3hrs later) her bowel had been put into a silo and she was in an incubator. Over the next week her bowel was gradually eased back (a little bit each day) until the 4th day when all of the bowel was back in and she was ready for her operation. During this time she unfortunately caught an infection and the operation was delayed for a few days. Her operation was finally carried out 7 days after birth.

Following her operation she was fed TPN (Total Parental Nutrition) for a week and everyday they drew back the green bile levels in her stomach through a tube in her nose which also fed down into her stomach. When her bile levels dropped the hospital started her on my expressed breast milk. She sampled her first bit of breast milk (also through a tube via her nose to her stomach) 1 week after her bowel had been closed (2 weeks after birth).

We finally got to hold her when she was 2 weeks old….and I will never forgot that first cuddle. She was in an incubator for 2 weeks and then in a hospital cot bed for another 3 weeks where I was also able to breast feed. Her nose tube was removed and after 5 weeks we finally got to take her home. By the time she was discharged she was breast feeding and just like any other baby.

There where a lot of ups and downs and upsetting moments during her time in intensive care, but you have to remain strong and positive. You have your good days and your bad days.

I thank the hospital staff and surgeon every day, as her operation was performed through her bellybutton. She doesn’t really have a scar. They kinda reconstructed a belly button for her, which looks like a larger than normal, flat, slightly mis-shapped belly button. We are really pleased with the result, as we were worried she was going to have a scar across her stomach. It doesn’t look like a normal belly button (as its totally flat, with no indentation), however considering how the baby is born and everything they go through, it looks petty good. I know not all hospital do it this way.

Our daughter is now 5 months old and so far everything seems to be going well. We haven’t had any set backs so far and we have just started introducing her to other foods (banana and baby rice) as well as her milk. We had a check up last week and where told she has a slight hernia, however its nothing that needs addressing now and hopefully never will.

If you have just been told that your baby has Gastroschisis or are due to deliver any day, the most reassuring thing I can tell you is that your baby is just as “normal” as any other child. Your baby will not look any different or behave in any other way. He/she will breath, smile, love and laugh like any other child.

There of course can be complications and every case is different. There can be extreme cases of this condition and you should ensure your hospital offers you as many scans as possible to monitor your baby’s condition and the bowel.

During our 5 weeks at Kings hospital there was another 5 babies all with the same condition in ICU (Intensive Care unit). As parents we all discussed our experiances and it soon became apparent that every babies recovery time with Gastroschisis varied. This ranged from 4 weeks to 3 months. We where told by the hospital that only 4 babies over the past 10 years (in there care) had died from this condition. The overall success rate is extremely high.

Good luck and remember every baby is a special gift from god and gastroschisis babies are no exception.

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9
Jan

Questions for other parents

  • I wanted to know, did any use there regular gynecologist to delivery the baby?
  • At what point do they start monitoring you more closely and how often can I expect to be monitored?
  • What doctor will be monitoring me more closely?
  • How many delivered there babies at the same hospital as their babies where in?
I am 11+ weeks and my doctor does not want to see me until I’m 15 weeks at that time I assume he will do another scan if not I will demand one.  I go to see a specialist at18 weeks.  The doctor just seems so laid back about this, which worries me some. Does the timeline sound normal to any? or Should I be concern and take matters into my own hands?  I’m sorry for all the questions but I’m just curious about how things work withhigh risk pregnancy.
Thanks
Mica
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