At just three years old, all Madison Merrick should be doing is running and playing like other preschoolers. Instead, she’s tied her to hospital bed, with only a feeding tube to keep her alive. Madison was born with a hole in her stomach and after years of treatment to try and repair her digestive system, her life now hangs in the balance.
The feeding tube in her chest is Madison’s last hope unless she can have a bowel transplant in the UK, but the tube is a constant irritation to the cute toddler – and it’s heartbreaking for her young mother Alana Merrick (20) watching her try to pull the tube out. “I have to hold her down to stop her. It’s a battle. Most days she has a bit of a meltdown.”
Without her feeding tube, little Madison would starve to death. But she’s had so many inserted during her short life that she keeps getting infections in her skin where they are placed – and if the tube she currently has in her chest gets infected, no more can be put in. Alana was just 17 when she gave birth. Madison’s father is not in her life, and when Alana first laid eyes on her daughter she vowed to do anything to protect her.
Alana knew there was a problem with the formation of Madison’s stomach from a 13-week ultrasound during her pregnancy, but didn’t want a termination. “I wanted to give her the best chance possible,” says Alana.
When Madison was born at 33 weeks she had a condition known as gastroschisis. There was a hole in her stomach and her intestines were protruding outside her body. Madison was instantly wrapped in cling film to help protect her intestines from germs. Alana couldn’t see her for seven hours after birth, as surgeons hurried to repair the baby’s digestive system.
At first doctors were confident the Auckland toddler would make a full recovery and be discharged in six weeks. But instead, Madison developed a severe infection. When they operated again, surgeons discovered that the tissue in her intestines was dying and they had to remove it.
After six months Madison was able to be fed milk and was even eating solids, and Alana and her baby were allowed to go home. But they were barely there a month when Madison’s digestive system started failing again, leading to an 18-month stay at Starship Children’s Hospital in Auckland.
“In that time she had nine infections in her line from being tube fed. We’d almost get her feeding again and something else would happen,” says Alana.
Madison was eventually allowed home for six months, but after a while could only keep down milk which wasn’t enough nourishment for the toddler. “She was sleeping 23 hours a day because she wasn’t absorbing anything,” says
Alana, who had to return to Starship with her daughter to live in the wards there. “Since March her gut hasn’t been working at all. She has the tiniest amount, but it’s nowhere near enough to grow. Right now she spends her life on and off antibiotics and hardly eats at all. She’s had no solids in six months. Anything she eats comes up in six hours.”
Alana says her daughter’s last hope rests with an application to the New Zealand Government to fund a bowel transplant in the UK at a cost of more than $1 million. The family are now fundraising for their living costs in the UK because they’ll need to be there for a year. Madison’s funding application will be considered by the Ministry of Health’s high-cost treatment pool, which so far has funded three patients to have bowel transplants overseas.
Alana’s deepest concern is that her daughter won’t survive long enough to go to England for the transplant. “It all depends if Madiee can wait that long because she’s on her last IV line now,” says Alana, who copes by taking one day at a time.
Being based at Starship for the past three years has been extremely frustrating for the young mum. “It’s terrible, there’s no privacy,” says Alana. “The staff are amazing. They make us feel at home but it’s horrible having to share bathrooms, share the kitchen and be greeted by 50 faces a day. “Madison deals with living in a small room really well but it’s not a life that she should have.”
Visit Madison Merrick’s Facebook page to follow her journey. To make a donation to Kids Foundation / Madison Merrick Appeal you can deposit funds to: ASB 12-3032-0253524-00
