It`s been close on a year now since i set up this Gastroschisis iniative and it is time to take a closer look at the success and/or failures of the website.
When i initially set it all up my thoughts were along the lines of having a useful Gastroschisis resource for parents to be and existing parents of babies born with this condition.
Over the year i have developed it into an expanded resource encompassing research and development, a gastroschisis toolbar, videos, your blogs and at the very core of the site is your birth stories and experiences.
Having read so many at times heart wrenching accounts of the Gastroschisis condition it has given me a renewed enthusiasm to carry on developing the website further.
As i am writing this i have just approved the latest article added by Mel and her now 1 year old Daughter, Mel becomes our 148th member since i set the website up in May 2007 and reaching even the 100th member milestone seems like a double edged sword.
I am pleased that the website has reached out to so many but on the opposite to that i am saddened to think that there are so many cases of the condition.
Now for more good news.
The website in my eyes had become a bit dated in design and the functionality of the system i was using did not offer all of the features i wanted to offer to our shared community, so it is with great pleasure that i can now announce that the website has undergone a fresh lick of paint, i think you are going to like the new website i know i do, but of course i would say that wouldn`t i?
For all of the existing members i have sent you an email, you will need to re-register it is just as quick and simple as before.
The transition from the old design to the new one is now complete
Dean
hi, i don’t no if im writing in the right place.
i am 14 years old and i have gastroschisis and when i was born and had the opperation to put
my intestines back where they belong i was left with a scar from the top of my stomach to the bottom leaving me without a belly botton, its been hard my 14 years of my life as ive been bullied about it, i have alot of questions that need answered about gastroschisis and im the right age now and thought i would look it up, i just want to no is there anyone out there that wants to talk and i looked it up on the internet everyone that has had the surgery seems to have a belly botton is there anyone out there that doesnt i would love to talk thankx. xx
Hi Demi,
You are not alone in not having a belly button, in fact the majority of those that have undergone surgery for Gastroschisis do not have a belly button, what the surgeons do when they replace the intestines is suture (stitch) the repaired wound to some kind of belly button shape.
Gastroschisis or opening in the abdomen where your instestines protruded, more often than not occurs just to the right of your umbilicus.
As for being bullied about the lack of a belly button, don`t worry about it. It is their lack of understanding of the Gastroschisis condition which just confuses them, your friends will stick by you, ignore those that are ignorant, you do not have to explain yourself to these people.
hi dean,
why thankx. Its great to have found a website like this it tell me alot thank you dean, i was wondering if you would no the answer to this cause im not sure if this is common my mum was told i could have children but if i leave it till im alot older something about my whomb will dissapear(well go away somehow) and i can’t have children thats my most scardest thing in the whole world write back pleasee.
Hi Demi, as you may have read this website has undergone a redesign, among the old designs comments i seem to remember a few Gastroschisis survivors have successfully gone on to give birth to babies of their own with no adverse effects.
It is the first time i have heard of a womb dissappearing, Gastroschisis for all i have read has had no direct effect on your abilities to reproduce, if your mother has a source for that information i am sure others and myself would greatly appreciate reading about it.
thank you so much you’ve really helped.
my daughter doesnt have a belly button we were told that you can request plastic surgery to have a belly button made when my daughter was older if she wanted to!!
hello was just letting everybody know that if your a member on face book then ive set up a group for my daughter bethany, its called ” help save my daughter bethany!!” it has all the information for families on hoe to give blood how to join transplant donor register and childrens liver diease links we have over 400 members and 2000 waiting to join, so please look us up!!!
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