BY JOANNE LAUCIUS, OTTAWA CITIZEN AUGUST 9, 2013
Michel Naubert’s mother knew there was something wrong with her unborn baby’s kidneys when she was less than four months’ pregnant.
Joanne Anka had gone for a routine 16-week ultrasound and ended up on the table for more than an hour while the technician waited for the fetus to urinate. He couldn’t because of a growth on his urethra.
Michel’s life was saved before he was born with cutting-edge in-utero surgery. Still, his kidneys had been damaged, and within a year of his birth, his parents knew he would need a transplant. He went on dialysis. When he was 3 1/2 years old, his father, Claude, donated a kidney.
Michel, now 18, was a high-maintenance baby. He threw up about 20 times a day. Anka had to estimate how much fluid he lost and replace it using a feeding tube. Caring for baby Michel was a 24-hour-a-day job and Anka gave up her job as a recording engineer when he was born. She didn’t mind.
“He was born with a smile on his face,” says Anka. “He was the easiest, most wonderful and charismatic baby.”
The Nauberts fought hard to give Michel as normal a life as possible. He can’t play contact sports because of possible kidney damage and he couldn’t go on a school trip to Costa Rica, like his younger sister.
“The medical is something that we needed to deal with. But we didn’t want for it to control us,” says Anka.
“I’ve pretty much had a normal life. The doctors and my parents made it possible,” says Michel, who plays hockey and tennis, skis and cycles and recently went on an 18-day canoe expedition.
He swam in the river at the cottage despite fear of infection. In elementary school, he showed the feeding tube he used to deliver medication, nutrition and water to the class for show-and-tell.
“They thought it was awesome,” says Michel, who plans to spend the next year in CEGEP, then wants to take a gap year and study communications in Montreal.
He acknowledges that it’s hard for parents to let go, but his parents gave him that space. Preparing him for the time he would legally be an adult and had to take care of his own medical needs began when he was very young.
When Michel was in Grade 2, he had to be sure to urinate every hour without fail. He still has to be sure to drink two to three litres of fluid a day. And he has to be sure to take his medications, which range from anti-rejection drugs to blood pressure pills, on a strict schedule, within a 15-minute window. Failing to do so could result in him losing his kidney.
This worries Anka the most.
“I picture him rejecting his kidney. The consequences are grave,” she says.
The hardest part of being a parent is knowing when to draw the line between standing back and intervening.
“You have to give your kid autonomy to function on his own,” says Anka.
“Yes, we wanted a life as normal as possible. But we didn’t want to hide the dangers.”
Teens and kidney disease: Risky business
Being a teen with a kidney transplant can be dangerous.
Studies in both Canada and the U.S. have shown that teens are more likely not to take their prescribed anti-rejection medications. This puts teens at an increased risk of “graft failure” — losing the function of their transplanted kidney.
Kidney transplant recipients must stick with a combination of immunosuppressants and steroids that have to be taken according to a strict schedule.
The reasons are many: teens can be forgetful and disorganized, have difficulty swallowing pills, and suffer from “voluntary resistance” — the desire to be like everyone else.
Ignoring the treatment puts both the new kidney and the life of the teen at risk.
Teens are twice as likely to fail to adhere to their treatment plan as younger children, according to a U.S. study. Their non-adherence rate is 60-per-cent higher than adults between the ages of 24 and 44.
They are also between 1.6 and 2.6 times more likely than younger and older transplant recipients to have a graft failure. Canadian figures are similar, says Dr. Todd Fairhead, a nephrologist and researcher at The Ottawa Hospital.
The most sobering statistic: in the U.S, the mortality rate for teens who lose the function of a donated kidney is 4.4 times higher than child recipients who are able to keep their kidney functioning.
There are solutions to help transitioning youth stick to their medication schedules. One is an automated reminder system. MedMinder detects if the patient opens an electronic pill box. If not, both the patient and the parent are notified with a flashing light, alarm, text or email. On the simpler side, a smartphone app can also act as a reminder to a busy or forgetful teen.
A study in the U.S. is looking at peer mentors who are not authority figures as a way to circumvent the tug of war between a teen seeking independence and a worried parent.
It might be unfair to blame graft failures on irresponsible teenagers, says Fairhead. Adolescent hormonal changes may play a role. At the same time, most kidney transplants have a lifespan of 10 to 25 years. It’s possible that many adolescent graft failures are simply transplants that have reached the end of their lifespan
via Michel Naubert: ‘You have to give your kid autonomy to function on his own’.