Nevaeh was born on the 3rd of September at 12:38 AM by emergency section due to the cord being wrapped round her neck, which was causing her heart rate to slow down. She was born with gastroschisis. This had been picked up on the twelve week scan and we were prepared for it. We were advised this was a simple procedure to correct and everything would be fine.
Everything was not fine. Unfortunately, she lost 95% of her bowel. Currently, we’re near the end of a four year legal battle regarding this result. After the surgery to have her bowel removed Nevaeh was in a really bad way. We were advised that if she survived the night she would be in the hospital for three years and be on TPN (total parenteral nutrition, a method of feeding that bypasses the gastrointestinal tract) every day until she was big enough for a transplant. They also said it was likely she would die before this and would be mentally and developmentally challenged because of spending so much time in the hospital. We were advised this was not a life someone would want to give a child and it may be best to switch off her machines.
At this time they stated if she got any worse they would withdraw medical care themselves as she was in organ failure and had septicaemia. We called our local priest who came and gave her a blessing with the family. Once he finished she opened her eyes and began to urinate meaning her kidneys had began to work.
From then she went from strength to strength. She had fought to survive and beat the odds of 10% the doctors gave her chances. We were always told the only option for Nevaeh was transplant, and that she would have to be on 24-hour-a-day TPN until she was big enough for it. Victoria (Nevaeh’s mother) spent every hour of every day researching the internet for alternatives, as we were continuously told she probably wouldn’t survive until then and if she did she wouldn’t live past three years old.
We finally found an amazing doctor in Manchester called Mr. Morabito. In Manchester we luckily got funding and Nevaeh stayed there for six months. There, she got bowel lengthening and got down nights of TPN.
However, our local hospital back home did not agree with their plan and, after four years, they threatened Manchester and stopped the funding. They are continuing to add more and more fat to Nevaeh’s TPN bags, which is dangerous. She does not need that. They continue to threaten us if we don’t agree to their plan, which is ultimately transplant.
As parents, we are very concerned about their way of thinking, as well as the way the NHS has completely failed Nevaeh. I can’t go into too much detail as the medical negligence case is pending in court. We need to get her over to Italy where her consultant from Manchester was based, as he has now moved to Italy. We need to get the right management and deal with a center who will give us options other than transplant.
We’ve already been told by different doctors that Nevaeh doesn’t need all that TPN, but our local hospital wants to get her to a certain weight ready for transplant.
When you have a child with a serious condition on the NHS, your child becomes a prisoner and you don’t get to choose what center or treatment plan you would like.
If you try and go against them, they threaten you. Our local hospital will not allow us to get a second opinion unless it’s transplant-centered. Why should they get to choose my daughter’s fate? I need to get her to Italy as soon as possible, before it gets to the point where she can’t travel and before they have done too much damage to her health. I won’t give up on her and will always have hope she will live a long life. The way we have been treated is disgusting.
Please help us raise money to get her to a center that doesn’t have a one track mind and has good dietary management before it’s too late. Help us get our miracle child to Italy to prevent any more damage our local hospital has already caused!
