Anyone Heard of Gastroschisis?

[Beeza8906]

At 16weeks i was told that my baby had an Abdominal Wall Defect. I was told that part of the Bowel was on the outside (also known as Gastrochisis),i have been told this is fixed by an operation at birth and a feeding tube inserted..
But... I am still worried and i dont still dont quite understand or know what i to expect and if there is problem later on in the childs live..
Anyone that can help me
PLEASE i want to find out as much as i can about this. I dont mind if its good or bad..

thanks Bee.. :bee:

[EsSjAy]

Hi hun....

I have heard of it but i saw a thread about it ages ago and looked it up... hopefull this may help with reading some other mummies experiences...

:hugs:

http://www.bubhub.com.au/community/forums/showthread.php?t=1134

[EsSjAy]

There are some excellent sites when you Google them also.... Was hoping that some of the mummies in the old thread were still on board but i don't think alot of them are around anymore....???... not sure....

Although a complicated condition technology has come leaps and bound with corrective surgery....
I know it's easier said than done but try and think positive thoughts....
Alot of children do recover and live normal happy 'healthy' lives...

All the best... x x

[Ashleigh<3]

Hewo Bee! (Tis me Ash!):hugs:

I don't have any advice but looks like essjay has pointed you in the right direction.:thumbsup::)
Wishing you all the best, I'm sure you'll find some information that will help. :hugs:

[Beeza8906]

Thanks...

The Doctors seem pretty confident that everything will be fine (but then again its not there baby is it?)
It kinda sucks to hear that the oldest surviving person is only 28yrs old but then again as you said technology has come a long way.
Its mainly the stress and worry of not being able to tell how much is actually on the outside untill bub is born..

I have searched google and have found a few things...but i was then told by the Professor i was referred to that 90% of the time this is "Bull****" and most sites put you more in panic mood..
So im kinda hoping to hear from people who have lived this and can give me abit of a step by step of what to expect..
Im finding it rather difficult to enjoy being pregnant because of this..
This has been a very stressful and almost depressing time for me.. When i should be enjoying it.:(

Thanks for your help..

[kiwibird27]

Don't google anything your child has, I have learn't the hard way, It will freak u out, usually u only find worst case senario, or scary statistics from 30 years ago!!!!!!!!!

My DD was in intensive care with a new born that was born with this defect, he was at the severe end, but the surgery went well, and after a few months (he had complications) in hospital he went home drink a bottle and normal. They told the parents they didn't expect any problems because the body is normal it's just on the outside. There was also one of these on that saving babies show, Same scenario everything was fine.

I'm not going to tell u it will be easy, putting your new baby through surgery is devestating, and it will be one of the hardest times in your life but u will find the strength and come out the other side with a beautiful baby and a new appreciation for what life is all about. My DDs first surgery was at 2 weeks old, most things aren't a choice!!!!

Don't worry about the oldest person surving, Technology is so amazing now, and they know how to treat this condition. If they can do heart surgery on a 1 day old, they can put a babies bowel back!!! You should see the children they are saving now!!!!!

Good luck

[Beeza8906]

Thanks i hope everything goes well for you..
Im preying it dos for me..
Ill keep you posted as i find out more..

[EsSjAy]

I do totally agree that 'Googling' can be the worst thing ever so i want to correct myself and just say that there are some excellent Australian medical sites that thoroughly explain medical conditions and their various treatments...

This is an excellent site from the Royal Womens Hospital in Victoria... http://www.thewomens.org.au/Gastroschisis

There are some really extreme sites that play up on everything bad... Go with reputable organizations/hospitals/support groups...

I know it's hard not to worry but it sounds as though you are in excellent hands which is fantastic and hopefully very reassuring for you...
Try and enjoy what is a beautiful time in your life... Although as i said in an earlier post... easier said than done...

Try and keep your chin up hun....
Let us know how everything is going...
Take Care x x

[Mackayla29w]

I'm writing this message while sitting here at the hospital. My baby had been scanned to have gastroschisis during my wifes first ultrasound.We did our basic internet research just to get a fair understanding of this birth defect and prepared ourselves of what we are about to face. It has been a very difficult time for my wife and me during these past 29 weeks. We have 2 boys and always wanted having a baby girls since we got married and finally this was our dream come true. This was our driving power that gave us hope::fingerscrossed: and happiness during this pregnancy. As you are probably aware, as your babies due date comes closer, monitoring (ultrasound and CTG) of the baby is conducted more frequently. weekly CTG and a fortnightly Ultrasound was our case.
Thursday 28th of February 08 is a tragic day for me and my wife:(. We had lost our beloved baby girl:crying:. No movement/kicks. No heart beat was heard on the CTG. Ultrasound showed no blood flow on four chambers of the heart. Our baby girl was just not strong enough and did not survive. As a result of this, my wife prepares to force deliver the baby out now. She had burst in tears so many times with mixed feelings of disappointment sympathy sorrow & anger. We are naming our baby girl Makayla. We will always love you:hugs:. God bless you:angel:. we will always miss you! Mum,Dad, J & J.

We hope all the best to those currently diagnosed with gastroschisis.

[mila]

my heart goes out to you and your wife at this terribly difficult time. i can not begin to imagine what you are going through right now and hope that you have supportive and loving people around you to help you and your family through this time of grievance and saddness.

my thoughts are with you. x

:hugs:

[LadyGrey]

oh beeza :hugs:

how are things going now?? how much longer do u have to go??

i know how hard it is, not really knowing anything until the birth. its the not knowing thats the hardest isnt it! when we found out frankie was sick my cousin contacted the producers of that saving babies show. they sent us the whole series on dvd. there was a baby born with the same condition and they showed the birth, the surgery, the recovery and finally the homecoming!! :smiliedance:
it was sooo good to watch that and know what we were in for before frankie was born. i think there was a baby on there with the same defect as yours. maybe you could google the show and find that episode?? might help??

have u found a support group online? that helped me too, theres a lot of really kind people in those groups who can help u through.

hope you're ok. keep positive, we'll be praying for you!

xx carly

[jes]

hi beeza,

i feel a little heartless writing this after the last post but i guess it will show you the two outcomes that could happen. I would first like to send my deepest sympothys to mackayla29w.

Our daughter was diagnosed at 12 weeks gestation with gastroschisis and it freeked us out, we thought the worst of corse! BUT after 10 scans and 37weeks we had our perfect girl born via c section. She had her bowel put back in at the ICN without surgery just a bit of local. she was the "best case" .ICN for 11days and SCN for 11 days. Breastfed and had no problems with her bowel since, she only has a large bellybutton no scare as such. There is alot more to the story than that but im sure you will contact me if you would like to know anything else!

keep a positive outlook it allways helps:thumbsup: well it cant hurt can it!


jessie