André Picard
From Thursday's Globe and Mail Published on Friday, Sep. 28, 2007 8:58AM EDT Last updated on Friday, Apr. 03, 2009 10:55AM EDT
Timmy Macdonald is a chubby-cheeked boy with a ready smile. He toddles around clumsily, wears a diaper and gobbles up his food greedily when his parents spoon-feed him.
Timmy has no words, but expresses himself with laughs, cries and a wide array of gestures. He loves TV, particularly watching the same movies over and over again.
In other words, the Sydney, N.S., boy is a typical kid.
But the Nova Scotia Ministry of Health has declared that Timmy is not a boy; he's a man.
A man who stands - when he can - a shade under four feet tall and weighs less than 50 pounds - about the size of a seven-year-old.
Timmy, you see, is 21.
But he suffers from a genetic disorder called ring chromosome 14, a condition so rare that it doesn't even have a cutesy name.
According to the Rare Pediatric Disease Database, fewer than 50 children have been diagnosed with the condition worldwide since it was identified in 1971.
Only one person has ever lived longer than Timmy with ring chromosome 14. The boy suffers from severely stunted growth, mental retardation, epileptic seizures and chronic lung disease that poses a constant danger to his life.
As one can easily imagine, he spends a lot of time in the hospital. It is his home away from home.
Despite their predicament, Timmy's parents aren't looking for pity.
They simply want their child to be treated, as he always has, by a pediatrician and in the pediatric ward of Cape Breton Regional Hospital.
But yesterday was, technically, Timmy's last visit to the pediatrician. If he gets sick again - and he will - the boy will not be admitted to the pediatric ward. He will be sent to the adult ward.
Happy 21st birthday, Timmy.
Rules are rules. Children are to be treated in pediatric facilities only until age 16 - and age 18 when there are extenuating circumstances.
There are some broader issues to be discussed here about why that distinction exists and how the transition from pediatric to adult care occurs in an era when there are ever-larger numbers of children with chronic health conditions.
But let's leave those discussions for another day and focus on Timmy.
He managed to skirt the rules and remain in the pediatric system till age 21 because - how can we put this delicately - there was an assumption he would long ago be dead.
But the health bureaucrats have finally laid down the law. Timmy is a man and he will be treated like a man.
"He's a child in every way but on his birth certificate," says Norm Macdonald, Timmy's dad. "Why in the devil can't the people who run the health system see that?"
Mr. Macdonald has no complaints about his boy's care. To the contrary, it's been wonderful. Timmy has had the same nurses virtually his whole life.
The family wants the boy to remain in pediatric care because of the "little things," the intangibles that they believe have allowed him to live longer than any expert believed possible.
"Sometimes Timmy just needs a hug or a kiss 'cause he's scared," Mr. Macdonald says. "He gets that from the nurses on the children's ward."
He won't get a hug on the adult ward. Nor will he have a friendly volunteer who will colour with him in the playroom.
Now that he's a man, Timmy's parents will not be allowed to sleep at his bedside and lend a hand, as they have done for years in the pediatric ward. Adult visiting hours end at 8 p.m.
Now only a cynic would suggest this is about money. But it costs a lot less to treat someone in an adult ward than a children's ward. Kids have private or semi-private rooms; adults are often in wards, with four to a room. Staffing ratios are much better in pediatrics.
But this just isn't about comfort and convenience. It could be a matter of life or death.
Recently, Timmy had a breathing tube inserted - as he has many times before - but on the adult ward he received an adult-sized tube in his child-sized body. The oversized apparatus caused an ulcer that blocked 90 per cent of his throat and almost killed the boy.
Timmy's situation may simply be a pathetic case of bureaucracy run amok.
But it deserves our attention - and our anger - because, ultimately, we should judge our health system on how it treats the most vulnerable.
Medical care must consist of more than sticking tubes and needles into people. Compassion matters. Flexibility is required. And common sense is a must.
Timmy is a child. He has been for 21 years and, hopefully, he will continue to be for many more years to come.
To learn more about Timmy Macdonald, check out his Facebook page: Let Timmy Go Back to Peds!apicard@globeandmail.com
The disorder
Ring chromosome 14 syndrome is a result of an abnormally shaped 14th chromosome. Chromosomes are usually shaped like a rod, but if damage happens to the ends of the rod, they can occasionally join together, forming a ring. This also results in the loss of the genetic material from the ends of the 14th chromosome that leads to mental retardation, growth delay, impaired physical co-ordination, distinctive facial features and epileptic seizures. Every chromosome in the body has two copies of itself, one from the mother and one from the father. Usually, only one copy is affected by the ring chromosome, the other is normal.
Source: MadisonsFoundation.org
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