Gastroschisis

Hi my name is julie,

I have a son who at 5 month of pregnancy was diagnosed with gastroschisis, he is now 2 and a half yrs old.

It was so scary at first when we found out the news, we were in the hospital for over two months and we were so lucky because at our first surgery we were done, all the drs said it was God taking care of us because they had never seen a baby with this condition do so well.

Eric will be 3yrs in August 3 of 08, and he eat, play runs like a normal kid. If you want to chat about our experience email me.

Hi i’m 19 years old and have a gorgeous little girl called macie pink. she was born on 25th sept 07 with gastroshisis. i found out on my triple test results that she had this condition. i was so worried at first and thought nothing but bad thoughts, i researched everyday about it and started feeling a bit better about it. i had scans every 2 weeks at my local hospital and at the hospital that was delivering ny baby.(addanbrookes)

i was meant to be getting induced at 37 weeks but macie decided to come early at 36 weeks by emergancy c- section. she was 4lb 6oz and had her operation 2 hours after birth. it was a scary experiance but i knew she was in safe hands. the surgeons were brillant and when i got out of recovery i got wheeled into intensive care to see macie she was on a venterlator for 1 day and stayed in the for 1 week then moved into special care for a longer 3 weeks. macie couldn’t have milk until she had a poo which took 2 and half weeks.she started on 1 ml of wilk every 4 hours and was put down her tube in her nose, and went up to 20ml every 3 hours and so on…

finally we got transfered to our local hospital and was there a further 2 weeks. it was a very long and stressful time for us but we’ve got through it and macie is 5 months now weighing 11lb. she so precious and so brave. her scar is hardly noticable.

so to all you mummy’s 2 be with babies going to be born with gastroschisis its really not that bad u must be strong for your little 1s! take care x

My daughter Sophie was born in April 2006. She was diagnosed with gastroschisis at my 12 week scan and the roller coaster began. I find it hard to believe now but we discussed terminating the pregnancy, such was the fear of this condition we had never even heard of.

Sophie was born 7 weeks early. I started having contractions and they tried to delay them for 4 days, finally deciding to go ahead with a C section.

Like any mother, I cannot really convey the emotion of overwhelming love I felt at that moment. But the hard part was just starting.

Sophie was operated on the following day but had complications and proceeded  to have 3 more operations over a 4 month stay in hospital. She contracted infection after infection and 3 months after she was born she developed such a serious one that she nearly died. Those 4 days in intesive care were horrific. We saw other babies pass away as we prayed for ours to live. We even had her baptised incase she never made it. She did. Thankyou God. Maybe those daily visits to the hospital chapel and tearful pleadings helped sway him. Whatever the case, I am now in his debt and will always be.

A month after that time in intesive care, Sophie came home from hospital. July 21st 2006. I cried my eyes out with happiness on the journey home and I will always swear that she looked at me with the most loving gaze I have ever seen, I took that as “We made it Mum”.

Sophie is now 20 months old and a bright, happy, mischevious little soul who is our world. She had some diet issues for the first year but these have all been ironed out and she is now a normal toddler with a normal appetite! Her scar is not nice, but this is a very small price to pay for her life.

I do not envy anyone at the start of their journey with gastro and I hope my story does not scare. I just had to be honest about the emotional journey that we had to travel to get where we are. But I tell you today - It was worth every minute to have our daughter in our lives.

Lots of love and best wishes.

Kx

My son Matthew was born at 34 weeks and wieghed 3lb 15oz at Bristol St. Michaels.  I was 20 years old and scared. Matthews gastroschisis was bad he had to have a blockage taken out when he was 3 weeks old.

He suffered from an extened abdomen for a very long time .He has chronic lung diease and every time he got a cold or flu we were back in intensive care the amount of times we were told that ‘He won’t make it through the night’.(famous last words from the doctors!)
Matthew finally came out of hospital 8 months later he was back and forth to the hospital for a while.

His chronic lung disease is handled with inhalers. He was diagnosed with amyoplasia last year, which means he has limited movement in his shoulders, arms and fingers. But i am glad to say that i am the proud mother of an extremly livley, healthy, intelligant and cheeky boy of 6 years old!

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, my name is Amber. I went through gastroschisis when I was a baby!

I am 14 now, and my life is wonderful!!!  I used to be made fun of when I went swimming, because of the scar on my stomach; I always wore one peices, but now all i wear is 2 peices. You get over it, and now I don’t care what people think about me ! My mom always told me that, “it doesn’t matter if people make fun of me, You’ll always have a story to tell !”

For all of the women having a baby with gastroschisis, and for all the kids that have had it, I am praying for you, and I know God will take care of you !!!

Love:  Amber

I don’t understand how this happened to the child i am carrying…..i ask myself could i’ve prevented my baby from getting this thing called “gastroschisis”??

So the doctor’s tell me it had nothing to do with what i did; it just happens 3 out of 9 pregnancies…..well, the next step…try and read up on the babies birth, care, after care, coming home….where is the info i need??  i want to stay positive, and how i can handle my baby on feeding tubes, surgery…i will.

Please let my unborn (due 5/13/08) survive when i carry my precious 8-9 months through..i love you, and i don’t even know you yet……..