Doctors who work with brain-injured newborns need humility

I’ll never forget a time I went to visit a child in the neonatal intensive care unit (NICU). I was in the waiting room during a shift change, and another mom was talking about her newborn and said that the doctor had recommended withdrawing care. “I realize he’ll have cerebral palsy,” she said, “but he’s still my my son.” Predicting how a newborn with brain injury will be affected is a science marked with uncertainty, yet parents...

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'A big part of my job is telling families the diagnosis'

By Louise Kinross Dr. Melanie Penner is a developmental pediatrician at Holland Bloorview who focuses on autism. She’s the person who gives parents a diagnosis of autism in their child. Frustrated at the years’ long wait for behaviour therapy in Ontario, she had a study published in JAMA Pediatrics last month that puts the cost of that delay at $267,000 per child over a lifetime. Melanie is happiest when knitting or managing her fantasy baseball...

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The up and down reactions to one dad's parenting world

By Ron BishopOur son Neil is 14. He was diagnosed at a week old with cystic fibrosis. When he couldn’t hold up his head or sit at age one he was diagnosed with cerebral palsy and developmental delays. He didn’t walk on his own till he was 11—that was an amazing day.It’s fair to say that Neil’s three favourite places are: a swimming pool, where he can engage in Olympic-calibre, slap-splashing; a set of stairs—any set of stairs, any size, any height,...

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Early autism therapy saves taxpayers money, study finds

By Louise Kinross Intensive behavioural therapy for autism is expensive—over $100,000 per child. In Ontario, the average child waits two-and-a-half years to get it.Now a new study in the journal JAMA Pediatrics puts the cost of that treatment delay at an additional $267,000 per child over a life time.That’s because later therapy is less effective, resulting in less independence in adults and the need for more lifelong support, says lead...

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Disabled teens crave risk, speed, freedom: Study

By Louise Kinross Many teens love to defy authority, speed and do other dangerous things.A new Holland Bloorview study finds that youth with the most complex disabilities are no different.The study—published in the Sociology of Health & Illness this month—found that youth with multiple disabilities want to experience freedom, speed, risk and time alone.For example, one young man said the safety belt on his wheelchair didn’t fit with...

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'A Matter of Dignity' wins 2016 disability reporting award

A Minneapolis Star Tribune investigation into how hundreds of adults with developmental disabilities are segregated and neglected in a Minnesota system of sheltered workshops has won first prize in the 2016 Katherine Schneider Journalism Award for Excellence on Reporting on Disability. A Matter of Dignity tells the story of adults who spend their days collecting trash for $2 an hour and who have been sent against their will to live in remote,...

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A big idea: Mobility for all

By Louise Kinross It’s a tough business problem: how do you commercialize a medical product for a niche market that can’t afford it?For 10 years, Holland Bloorview scientist Jan Andrysek envisioned millions of amputees in the poorest parts of the world regaining their mobility and livelihood with the all-terrain prosthetic knee he invented and developed.But it wasn’t until American social entrepreneur David Green got involved in 2013 that he...

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Research day challenges dominant ideas about human value

How ironic that on the day Holland Bloorview research head Tom Chau encouraged us to "push against typifying perspectives" in our work, CBC's The Current was interviewing bioethicist Peter Singer on his view that parents should not be "stuck with having to look after a severely disabled child." You can watch our Bloorview Research Symposium live-streamed here, and it is well worth a watch. Louise ...

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Some thoughts on acceptance

By Louise Kinross One of our staff is doing a workshop for parents on acceptance. She asked me for resources and I recommended these BLOOM pieces below. But first, a story from Adrian Anantawan, an internationally recognized violinist and former client at Holland Bloorview.  In university, Adrian chose to stop wearing the prosthesis he'd worn all his life (he was born missing one hand). He said the prosthesis was hot and heavy and didn't...

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France upholds ban on Down syndrome ad: Children too 'happy'

By Louise Kinross In an extraordinary decision, the Council of State in France has upheld the decision of the country's TV regulator to prevent this video, whose message is that children with Down syndrome can be happy, from being seen on French TV. The ad, launched by Italy's CoorDown and Satchi & Satchi for World Down Syndrome Day in 2014, has been viewed on Youtube over 7 million times. It won six awards at the 2014 Cannes Lions International Festival of Creativity. The idea for the ad came when CoorDown received an e-mail from an...

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Hardships, silver linings and me: A diary of rehab

By Alivia Osland I’ve been in the hospital for almost three months because I’ve been diagnosed with Guillain Barré Syndrome. The lower half of my body was paralyzed (my whole body could have been paralyzed, so I’m considered lucky). I had problems with my breathing and swallowing and what wasn’t paralyzed was numb and tingly and extremely weak. I also had an ongoing headache for the first month. At the beginning of this...

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How one mom embraces a new life in Canada

By Louise Kinross In 2013 Sharda Ali-Ramjattan moved from Trinidad to Toronto with her daughter Selina, 9, in order to access better health services. Her husband Danny and son Saeed followed two years later. Her daughter Selina, now 12, has a rare genetic condition related to the TUBB3 gene that was only diagnosed recently. Sharda talked to BLOOM about why they made the move. BLOOM: Why did you decide to move to Toronto? Sharda Ali-Ramjattan:...

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