Elliott may face liver transplant
Do you know a Kiwi kid fighting the odds?Share your stories, photos and videos.
The mother of a 7-month-old Southland girl suffering from a rare and life-threatening liver disease says the family was devastated when a sudden deterioration in their baby's health led to a transfer to Starship children's hospital in Auckland.
Elliott Gulliver was diagnosed at 5 weeks with biliary atresia (BA) - a disease that affects the tubes that carry bile from the liver to the gut.
Doctors at Starship are now determining if Elliott will need a liver transplant because of scarring from the disease, her parents say.
Elliott's mum, Rebekah Gulliver, still remembers when doctors told her and husband, Fraser, "you need to sit down" when breaking the news that Elliott's illness was serious.
"It was probably one of the toughest moments of our lives," Mrs Gulliver said yesterday.
Elliott had inherited her parents' Polynesian skin tone, so there was no yellow, jaundiced colouring that would have alerted them that anything was wrong in the first weeks, she said.
Elliott was a happy, lively baby and it was not until she was changing her nappy at a function that a friend - who was a midwife - said she was concerned by the light colour of Elliott's stools and told her to see her GP.
After tests and the diagnosis of BA in August, the Gullivers' lives changed forever.
"For new parents this was overwhelming ... it was rough. This is something Elliott will have to deal with the rest of her life."
Elliott was flown up to Starship hospital in Auckland two weeks later and had an operation to prevent further damage to her liver.
Mrs Gulliver said that from the beginning the community rallied around them with fundraisers as weekly blood tests, weigh-ins and appointments with their pediatrician to monitor how Elliott's liver was doing, began.
An assessment for a transplant would happen this week, though doctors were trying to get Elliott's weight up first, Mrs Gulliver said.
"It's a lot to take in right now. It's difficult ... but I met a woman [in Auckland] who had BA who was about to have her second child. Elliott will always have this, but it was good to remember that she could still lead a normal life. She's a tough wee thing with a fighter's spirit."
A garage sale will be held on Saturday for the Gulliver family, with leftover items from last weekend's fundraiser for Myross Bush woman Tania Dickson, battling cancer in Australia.
~ About one in 10,000 babies are affected by BA in New Zealand.
~ BA is when the bile cannot drain, and it builds up and poisons the liver. The cause of BA is unknown and there is no cure at present.
~ The first sign of biliary atresia is jaundice, which is common in babies, but usually goes away by two weeks of age. The jaundice of biliary atresia does not go away and may be the only sign of early biliary atresia.
~ Babies with BA may also have dark yellow or brown urine, pale, white or light beige-coloured stools and slow weight gain.
~ Treatment requires a surgical operation early on to prevent liver damage, though the operation is not always successful.
~ If the liver is badly damaged, a liver transplant may be the only cure.
- The Southland Times
Should fluoride in water be the responsibility of central government?