Noah’s Ark Children’s Hospital patient Georgia Diamond, of Newport, has just spent her first Christmas at home with her family. Fifteen-month-old Georgia was born with gastroschisis, a condition where a child has a small hole in the front of the abdomen through which some of the intestine is protruding, resulting in her being unable to feed.
Since birth she has made Noah’s Ark Children’s Hospital for Wales her home, but now Georgia, who has had numerous operations to correct the dilated section of her gut, has been able to return home to her delighted family and mother Lisa James, 25.
Due to her condition, Georgia requires intravenous total parenteral nutrition (TPN) which means she is fed by a tube, as well as using omeprazole which reduces her stomach secretion, and will be for the rest of her life unless she undergoes a transplant. Doctors have told her that she must wait for two years until she is potentially able to have a intestine transplant at Birmingham Children’s Hospital, one of two hospitals in the world that provides this type of treatment.
Mum Lisa said: “We are hoping to find a way to feed her as she needs to be tube fed. If we can do that then we can progress from there. We are hoping that it will be this month or next or in the spring at the latest but it just depends in what they find and as they will be doing lots of different tests and she may require and operation – we are going in completely blind.”
Lisa can’t praise the staff at Noah’s Ark Children’s Hospital enough, especially those on Ocean Ward, who have trained her to use all of the equipment required to keep Georgia at home. “I loved learning how to fix her line because it was the first thing I was able to do for her. I had never even been able to change a nappy.”
“We spent more time in hospital than at our real home. I was there every single day, from first thing in the morning until last thing at night, when she would go to sleep, all the staff have become like family to us.”
“We were able to take her home on November 29 and she spent her first Christmas at home. This Christmas was the best one ever, we had all the family at my house, It is lovely to have her home.
At the moment we are going to weekly appointments at Noah’s Ark Hospital and if she even catches a cold she will have to stay there. We will be receiving nursing care at home starting this month so that will be really helpful.”
GASTROSCHISIS: A RARE DEFECT
- Gastroschisis is a type of abdominal wall defect that occurs when a foetus’s abdomen does not develop fully.
- The intestines usually develop inside the umbilical cord, before moving inside the abdomen a few weeks later.
- However, in gastrochisis, the abdmonial wall does not form completely, so the intestines develop outside the body. They are then open to the air when the child is born.
- Only one in 3,000 babies are born with the rare condition every year.
- In many cases, it is visible on prenatal ultrasound scanning.