Gastroschisis(gas.tros.chi.sis) Support and Resources

Brand new support for parents with Gastroschisis babies in Australia!

This is what it is all about, support, a reach out from parents who have experienced the gastroschisis condition first hand and are willing to help others. There is no reason why any of our hundreds of members here can`t occasionally stop by the Gastroschisis Support Group, Australia and help out with a few answers there as well.

Like me April has been inspired to help, so stop by and add your stories to her website too.

Dean

Hi

I’m 20 weeks pregnant and my baby has gastroschisis. I’m currently living in Suffolk and go to Adanbrookes for specialist tests and monitoring. For a while I’ve been hoping to re-locate to Cornwall, and am now in a position to do so in the near future. I was wondering if anyone knows if there are any specialist units in the south-west, or what the general practice is for mothers living in this area?

Thanks in advance for any help!

Sarah

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

Hi everyone, this is our story. My son is 3 months old and was born with gastroschisis…

My son was diagnosed with gastroschisis at my 18 week ultrasound. I knew immediately what is was and from then on I had routine ultrasounds and spend the days researching and trying to stay positive.

I started seeing a very caring GP in addition to my local clinic and this extra care really helped me get through the pregnancy. Having the baby checked often really helped to ease my mind during the pregnancy, so for those pregnant now I’d recommend seeking as support as possible.

I was going to be induced at 37 weeks but my son decided to come even earlier and I had an emergency caesarian at 36+2 weeks. I delivered at a major hospital 3 hours from home who have paediatric surgeons on call so his gastroschisis was repaired within four hours after his birth. He had a primary repair and the whole thing was completed quite quickly, but I dont think the outcome would have been affected if he had to wait longer for his surgery.

My son had morphine for pain relief, then baby panadol but was off all pain meds by day 3. He was 5lb 12oz, 4 weeks early, and we spend 16 days in NICU. During our time in NICU we were so proud of him for going through what he had to and now he is a happy healthy 3 month old.

This has only been a short one from me for now but please feel free to contact me with any questions or support you may need. I also have photos if anyone would like to see some.

Hi i originally posted this on http://www.geeps.co.uk but id thought id post it on here as well.

Umm where do i start, i was born in 1986 with Gastroschisis which wasn’t picked up by scans, anyway to cut a long story short im now 21.

Something I have found recently is Fantastic support for parents that have children born with gastroschisis (well done you guys) but meeting people that are now 20+ that were born with gastroschisis seems increasingly difficult. This is probably due to the fact the internet was at an early stage of its life and the outlet for people to discuss such matters wasn’t there.

My Scar is about 11cms long and i must say looks fairy impressive , I have been offered plastic surgery but I wouldn’t change it for the world!

I have a ball of scar tissue on the left hand side of my scar with is about the size of my fist, If i get abit of a gut on me I have been told that the scar tissue will stick out and cause some problems , none which im worried about as I plan to stay in shape but it would have to be removed if that ever happened.

I have also had severe stomach cramps with has had me in a ball on the floor in tears, not fun but recently they have disappeared after around 4 years and a change of diet,, now I have to battle off the hayfever GRRRRR
I lead a very active life, I play rugby and I rock climb a fair bit too, so I can say that been born with gastroschisis hasn’t had a large affect on my life.

It would be great to hear from other people that have gastroschisis to see what experiences they have had, and what dumb questions doctors ask like

‘ So how long have you had gastroschisis for? ‘

I was born at The North Staffs hospital via Caesarian Section , from what ive been told there was an Egyptian doctor there at the time who was willing to leave me for dead, as he hadent a clue what was wrong with me ! , anyway the nurses complained, and i was taken to Birminingham Childrens Hospital to be patched up.

My parents were concerend as im sure anybody would be , i was filled full of feeding tubes and still have the odd scar knocking about ,one on my neck and one just above my right nipple , and one on my left arm , weird things ops , id say the scar is around 30 stiches.

Most Doctors are retards , yes they do a fantasic job but good god i wonder if i know more about stuff than they do !. I know that the nurses at Birmingham Childrens Hospital took photos of me for some medical text book or for some other medical purpose , maybe i should give them a bell and see if i can get my hands on them, thats if they still exist

Hope to hear from someone soon you can email me at spydermonster@hotmail.com

P.S Chicks dig scars