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.
Amber was admitted into hospital in November 2009 after becoming unresponsive at nursery, doctors discovered a tumour in her abdomen and she was transferred to Sky Ward at the Children’s Hospital for Wales. After four days of scans, ultra sounds, x-rays among other numerous tests her mother Aishling’s worst fears were confirmed when she was diagnosed with Neuroblastoma – a rare form of cancer which affects nerve cells.
Luckily Amber’s cancer hadn’t spread, but she needed risky surgery to remove the grapefruit sized tumour which was very near both her main blood vessels and her spinal cord. On 13th January 2010 Amber was admitted to South Ward for the 4 ½ hour operation. The operation went well and amazingly despite being told she may need to spend time in intensive care Amber was home after just 5 days.
After having the operation Amber’s cancer was lowered from Stage 3 to a Stage 1, which meant she didn’t need chemotherapy, however a routine test at Easter showed high catecholamine levels which means that Amber needs to be ‘actively monitored’ by having MRI scans every 3 months and urine tests every 4 weeks.
‘The hospital has been absolutely fantastic, as have the staff. Her consultant is better than we could ever have asked for, and has treated her as an individual since day one and has also been very honest. Her surgeon works miracles, he saves lives, and I was happy knowing that he was looking after her. And the nurses and play specialists! They are so wonderful! I met some very wonderful and special people during Amber’s times in the hospital, and that’s why we want to raise money to make it even better!’ said Aishling.
Aishling went on to organise a very successful sponsored walk of Snowdon to raise money for the Noah’s Ark Children’s Hospital Charity. ‘The money raised will go towards purchasing an open MRI scanner for the Children’s Hospital for Wales, so that children won’t have to go under general anaesthetic to be scanned like Amber does, it will also mean that parents will be able to lie beside them during the scan.’
Hari was born safe and well in 2008, despite the belief of the medical profession that he wouldn’t make it. He soon showed his infectious personality and a real hunger for life. However, he began showing signs of delayed development and the stress and concerns started all over again for his parent’s David and Ceri.
Hari undertook numerous tests and was found to have hyper-mobility in his joints resulting in an inability to crawl and walk.
As part of his treatment, Hari had a course of hydrotherapy in his local hospital. The staff worked hard to build his muscle strength and core stability in a series of sessions in the pool. Hari took his first steps just a few days after his second birthday. Mum Ceri admitted she ‘shed a tear’ when he took those steps and describes the past few years as an ‘emotional rollercoaster.’
Hari’s big brother Dylan supported Hari through every step of this journey standing by his side and showing him how to walk, one foot at a time. Ceri said; ‘Dylan has always been very supportive to Hari, both physically and mentally.’
Dylan watched Hari in his hydrotherapy sessions and encouraged and supported him at every opportunity. Dylan also questioned the shortage of time that was available in the pool and the family discovered that it was a shared resource. The pool could only be used by children’s physiotherapy for a limited amount of sessions per week.
This clearly remained in Dylan’s mind because he came home from school with information about the Noah’s Ark Children’s Hospital Charity’s Splish Splash Splosh campaign. Dad David recalled; ‘He was really excited that the Noah’s Ark Children’s Hospital Charity were raising money for a dedicated hydrotherapy pool for children. He asked if he could do something special for his little brother and other children in South Wales.’
Read about Dylan’s amazing efforts in our news pages.
Loki was only 6 months old when he was admitted to Ocean ward at the Noah’s Ark Children’s Hospital for Wales. He was admitted with a gastrological problem and was not eating properly.
He was assessed by the expert team at the Noah’s Ark Children’s Hospital for Wales and his condition was deemed so serious he was immediately transferred to the High Dependency Unit.
He remained here under close observation for five days before going back to Ocean ward. After only a day back on Ocean, poorly Loki had to go back to the HDU for more close observation by the specialist nursing team there.
Having any child in hospital is stressful, but this is particularly so when they are so young. Kirsti and Stephen, Loki’s parents, received great support from all the staff at the hospital. With Stephen on a course in Cardiff and Kirsti at home with Loki’s brother and sister, over two hours away, regular updates from the nursing staff on Loki’s progress was vital to keeping Kirsti and Stephen at ease. Kirsti said; ‘The hospital couldn’t have done more, they were fantastic!’
Loki is now fit and well and his parents feel his time in hospital hasn’t held back his development at all – if anything it has made him stronger.