Mario Moon and Susan Mead with their 11 year old daughter, Jacqueline Mead. Photo / Michael Craig
Mario Moon and Susan Mead with their 11 year old daughter, Jacqueline Mead. Photo / Michael Craig
Eleven-year-old Jacqueline Mead suffered a stroke and haemorrhage when she was a baby, as a result of medical misadventure. Now the parents of the little girl who survived against all odds are trying to secure her future, writes Susan Edmunds
Susan Mead tries hard to keep life as normal as possible for her daughter Jacqueline. The 11-year-old goes to Alfriston Primary School, is a proud sister to three siblings and loves playing on the monkey bars at lunchtime.
But she communicates with an iPad and sign language and needs a teacher aide - and tells her classmates that her scars are from when she was attacked by lions, tigers and bears.
Ten years ago, Jacqueline suffered a failure in treatment at the hands of some of the country's best paediatric doctors, which left her with a mental age of 6.
"Jacqueline thinks she's normal, she doesn't know she is different," Mead says.
Once, when Mead took her daughter to look at a satellite school for children with disabilities, Jacqueline asked if she was there to help the other kids.
Mead says Jacqueline has a strength of spirit that astonishes her.
"To give her a bit of normality at school we took away the super vision at lunch time and she hung on the monkey bars for half an hour. She ended up with blisters on her hands. But when she came home she didn't say, 'My hands are sore, Mum', she came home and said, 'Mum, I did the monkey bars'."
Mead and her husband, Mario Moon, have fought to create a joyful life for Jacqueline and Hailie, 12, Lily, 6, and Molly, 3.
But Mead has had a scare with pancreatitis that brought home her own mortality. She and Moon have long since given up on their dreams of careers and home owner ship, but they are starting to worry Jacqueline's condition might remove their other daughters' ability to aspire to the same.
"It made us start thinking: 'What are they going to do when we're no longer here'?" The outlook for Jacqueline in 2005 was bleak. Mead was told the baby would never walk or talk.
She was born with a rare liver condition, biliary atresia, but she suffered serious complications after an operation to drain bile from her liver.
Subsequent reviews found that had doctors delivered a daily dose of Vitamin K, she likely would not have suffered the stroke and haemorrhage on September 28, 2005, that destroyed 63 per cent of her brain capacity.
The reviews, one by a paediatric expert at London's King's College Hospital and the other an internal Starship Children's Hospital review, both blamed failure by clinicians to administer the vitamin.
Other contributing factors were an overworked gastroenterology team and inefficient handover procedures and record-keeping.
At the time, Starship clinical leader Richard Aickin said the care ¬Jacqueline received was "deficient", and that the hospital was deeply sorry for the ordeal the family suffered.
That failure alone would be devastating. But there was more to come. Jacqueline had a liver transplant but the organ she was given, from an aunt in Australia, was infected with Hepatitis B.
"It wasn't until two years down the track that Jacqueline started turning yellow again. She had a distended stomach.
"We took her into Starship and asked them what was going on ... we had full bloods done and it came up that Jacqueline had Hepatitis B."
Hepatitis B can lead to cirrhosis and liver cancer.
Mead blames Starship for transplanting the infected liver.
She says hospital staff told her first that they didn't know and then that they had to act quickly because Jacqueline was at death's door.
Auckland District Health Board spokesman Gilbert Wong declined to comment on the transplant and said Starship Children's Hospital had nothing to add about the case.
Mead and Moon refused to accept they could not help their daughter forge a decent life. They knew they could not heal her but believed "that in a loving, caring family we could tend to her needs in every way possible, which we have done 100 per cent".
Life changed dramatically. Moon and Mead gave up their jobs to become fulltime carers. "He was a painter and decorator, I was a neurolinguistic programmer but while I was in hospital who was going to tend to Hailie and keep the family unit together?"
Of Jacqueline's 11 years, 4½ have been spent in hospital. Moon has had to look after their other children while Mead sets up camp at the hospital bedside.
"It's worse than a prison.
"For four Christmases, Easters, birthdays, we have been there."
Siblings are not allowed to stay so Mead has got used to waving her family off while she stays with Jacqueline.
Mead recalls Hailie asking what her Mum had felt about her other children when she had to spend so much time in hospital with Jacqueline.
Jacqueline plays ball with her sisters (L-R) Lily Mead, 6, Molly Mead, 3, and Hailie Mead, 12. Photo / Michael Craig
"I said, "Some of the decisions I have had to make have been very difficult'."
Hailie is already asking what will happen to Jacqueline when her parents die.
"She said, 'Don't worry, Mum, we'll look after her'."
Jacqueline wants to be a nurse or a chef, but neither is likely to be possible. "She can't tie her own shoelaces or put on her own shoes."
What will become of her is a constant concern. Worrying about it keeps Mead awake at night. "We're in a Housing New Zealand home with no support around us. My mother and father passed away in 2013."
They have set up a page on donation site Givealittle to raise money to buy a house for Jacqueline.
Mead says it would take a huge weight off her mind if she knew her daughter would always have a house to go home to.
"We have letters from Starship. I can put them up on the wall. I can use them as wallpaper but that's not doing anything for my daughter, is it?
"Jacqueline has had one pay-out of $23,000 which we have put into her trust. It's untouchable until she hits 21 but even that isn't going to do anything.
"Not everyone wants a mortgage but we want a mortgage that bad that it's what we lie awake at night thinking, and not for ourselves."
Mead says the $23,000 ACC payment was not enough to buy a house and although it might contribute to a deposit, they still couldn't service the mortgage.
Despite the tough road the family has been on, there are moments of pure joy.
Jacqueline started walking at about 2½, although she has a limp. She has learned sign language and communicates through an app on her iPad, which speaks for her.
Moon was initially reluctant to learn sign language, convinced that Jacqueline would learn to speak eventually.
Jacqueline Mead. Photo / Michael Craig
"But one day she went up to him and signed, 'I love you, Daddy.' He said, 'What did she say to me?' I told him and he said, 'Teach me sign language.' One day a week we just sign. It's beautifully quiet."
Mead is astounded at the progress Jacqueline has made since those terrible first days in hospital when she was told she was a selfish mother for wanting to keep such a disabled child alive.
"Look how far she has come, from someone who was never going to walk or talk, through all these ailments.
"She's brilliant. She's my heart, my glue in this family. She just needs a break.
