Tuesday, August 25, 2009

New Zealand woman with spina bifida beats the odds

From The Dominion Post in New Zealand:

When Trudy Dunlop (pictured) was born with severe spina bifida, doctors gave her a month to live. But she is still going strong, 46 years on.

Trudy Dunlop was born in 1963 with a gap in her back and an ultimatum hanging over her head.

Diagnosed with "the worst degree" of spina bifida, she would almost certainly not survive, doctors told her parents.

"It was a big membrane exposure," Ms Dunlop said. "The only decision they had to make was whether to close that and allow me a chance to survive, or leave it open and let nature take its course."

Her parents hedged their bets, Ms Dunlop said. "They waited a few months to see how I'd go and then said, 'We'll get it closed.' "

There are three types of spina bifida.

The most serious - and the kind Ms Dunlop has - is meningomyelocele, where part of the spinal column never fuses together, allowing the spinal cord to protrude through the opening.

The cord is either damaged or never develops properly and the usual result is loss of sensation or paralysis below the level of the spinal defect.

Surgery to close the gap in Ms Dunlop's back saved her life, but it could not repair the damage already done to her spinal cord. Paralysed below her thighs, she and her family were left to do the best they could with no support.

When she was nine, her parents separated. She became a ward of the state and was "shipped off" to Pukeora Home for the Disabled in Waipukurau. "It wasn't a very nice experience. Anything you hear about institutions - it was true."

At 17, she ran away. "I had a medical appointment in Wellington and took a bus there and never came back."

Since then, she has spent her life fighting the odds and the prejudices that have dogged her from birth.

Normal adult experiences - getting a job, learning to drive, getting married - have been major achievements.

Her biggest victories are her two sons, Shaun and Jay. "I was determined to have a family [but] it was so hard to get a doctor that would take me on.

"The very first obstetrician we went to . . . got this big medical book, threw it on his desk and said, 'You're bad breed'.

"Everybody advised me to have an abortion. That was really hard because I wanted people to be happy for me like everybody else."

Shaun, now 26, was born in 1983 by planned Cesarean section - two months early, but otherwise healthy.

Her younger son Jay was born at 25 weeks by emergency Cesarean section and "had every complication you could imagine", Ms Dunlop says.

Ad Feedback Like his mum, though, he fought back. "Now he's a striking, nearly six-foot, very vivacious, very outspoken 23-year-old."

Despite being in a wheelchair all her life, Ms Dunlop has been more active than most people with full use of their limbs.

Sports-mad, she shone in track and field and held the national disabled table tennis title for several years, only giving up her spot in the 1984 New Zealand Paralympic team because she became pregnant.

As she has got older, though, her list of medical complications has grown. "I lost my left leg due to osteomyelitis. I'm about to lose my right leg as well due to oedema [dropsy]."

The medication she has taken for the past 12 years dried her mouth out, depriving her teeth of the natural antibiotic found in saliva and causing them to rot.

Later this year her remaining teeth will be extracted.

It is not just her body that suffers. "I've got down, I've got depressed."

The sons she was told she could never have are her motivating force. "I don't think I'd be where I am today if it wasn't for them."

Support for people with physical disabilities is better than it was in the 1960s but still has a long way to go, Ms Dunlop says. "I think funding's a huge issue - for people with disabilities to get out there and be independent."

She lived in state housing after her marriage ended, but had to move out when her sons left home because the house could not be modified for her.

"I'm in residential care when I should be in my own independent flat."

She has a part-time job at WelTec helping students with temporary and permanent disabilities and is "saving like crazy" to buy a house she can modify to suit her needs.

She has been agitating for years to get ACC to compensate people with congenital disorders.

It's an uphill battle, but one more fight doesn't faze her. "I don't think it'll ever change - but hey, you have to try."