My Story of baby Elise, 21/3/11, 34+3weeks <3(8 Posts)
We too unfortunately fell victims to Gastroschisis, we lost our little boy Luey Jacob in 2011 when he was just 2 days old. What we found is that not a lot is known about the condition over here and little research has been done. After losing our little Luey, we decided to set about a UK based charity in order to fund medical research and get to the bottom of the condition. We are in a fortunate position as my partner Billy, is a professional football player and we have received a lot of press. We have turned this into something positive and through the press people have heard our story. In doing so we have raised over £53,000, which we have set up a medical research program for Gastroschisis.
The reason for my posting was to say that we would love to hear stories from your members in their experiences and equally if any UK based families get in touch I am happy to be a connection to provide support over here. We have a 24 hour telephone service to provide ongoing support as well as family support packs for families who have to endure long hospital stays. For those who are less fortunate and need a little extra help with items either for baby or themselves or indeed help financially for travel to the hospital.
We know our charity won't bring our little boy back, but by linking up with other families and sharing experiences we hope we can get to the bottom of the condition that is still a mystery and continually on the rise.
If you feel you have UK contacts who would benefit from our services please don't hesitate to pass on our details.
Thank you for your time.
Jade & Billy
Thats amazing I'm so glad it had a happy ending for you. One of my twins was really poorly & we nearly lost him but he pulled through & he's exactly the same the happiest smiliest baby you've ever seen!. congratulations & I hope she keeps on doing well & pulling through she sounds like a right little fighter.
Elise sounds amazing - and obviously has an amazing Mum too!
It sounds like Elise is doing well and I'm sure you're love is helping her through this gruelling time. I do hope she goes from strength to strength. Thanks for sharing your story. x
Wow, what an amazing story, Elise is obviously a fighter and determind to pull through. I hope you and she continue to progress well. And I echo Ellendandbump, there is nothing wrong with PND, just make sure you get some support if you feel you need it. I nearly didn't read this thread as I was worried Elise hadn't made it and I knew it would be so upsetting. I'm so glad I did. Good luck for the future.
It sounds like your little girl is doing amazingly well and so are you, and PND can rear its nasty head at any time until the baby is 12months old, so if you do struggle, you could still have PND, and it is nothing to be ashamed of, i wasnt diagnosed until my son was 10months old, and i was fine, happy, going out etc. And dont worry about breastfeeding, i couldnt breast feed either as although when expecting my breasts had been leaking as soon as my son was born my milk dried up and i had none to give. It really badly affected me.
I hope your daughter continues getting better. There may seem to be loads more problems but she is obviously a fighter. x
My name is Sarah and this is the story of my baby girl Elise Carole, When i was 12weeks i went to my first scan and being terrified before the scan i had a feeling something was wrong....I was right we found out that Elise had something called Gastroschisis.
(where the tummy stops forming and the bowel and other organs form on the outside of the body)
On finding this i burst into tears cus i had seen it on OBEM! I couldn't believe this was happening to me... at 16weeks we found that her bowel was starting to swell so i had to have more and more scans.. at 26weeks we found that her bowel had collapsed and come out of her tummy more, this caused more swelling. I was told that she could have a blockage there or a twist in the bowel so i would be sent to a specialist hospital in Southampton Neonatal unit.
I was put under alot of stress at this point not knowing what was going on with my baby. I was told that she was showing signs of distress at 33weeks, then got told she was going to be delivered by section (i was gutted) I had to wait a week before Elise was born, on 21/3/11 at 15:55 Elise was born.
She weighed 5lbs 12oz and had to be put on a breathing tube right away. I didn't see my girl for 11hours after she was born cus they needed to operate right away but they couldn't get all the bowel in.
(she had her large intestine, small intestine, gaul bladder, appendix and some of her tummy on the outside)
When they were finished they told me they had to unpick the bowel from the hole as it had stuck to the defect, and they found she had a dead bit of bowel that had twisted and come apart so she couldn't poop.
(there was nowhere for it to go!!)
She had full closure after 2 days of her bowels being in a Silo. She was loosing too much fluid from the hole so they had to poke it in. After this she was put on a TPN and we tried taking her off the breathing tube. (WORKED 1st TIME!!) She just had the oxygen prongs for 5 days after! Elise was 6 weeks old before they even thought about operating, but nevertheless on 4/5/11 she went for her surgery a grueling 5 hours later she came out, she wasn't doing well at first, she was in shock and by this time she was actually addicted to morphine. We weaned her off it slowly.
After 2weeks recovery from the surgery she was allowed to have milk and 1 week after that she was fully on the breast and ready to come home!! So after 9weeks in Neonatal she was finally home.
But the problems didn't stop there.
We found that she has a milk protein intolerance. So i had to stop breastfeeding (Gutted again.)
She has been admitted 6x to our local and once to her birthplace due to her tummy not being right... but for a little while she was doing so well until a few days ago when we learnt that she could have narrowing where her scar is on the bowel.
But!! Through out all this Elise is the happiest baby I have ever seen! You can never tell what she has gone through!!
I feel like its still my fault sometimes but doctors have no idea how this is formed or how this is caused. People tell me I have been so strong with all this as i was cleared of PND when elise was in the hospital.
Thank you for taking your time in reading this!
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