Mama and Dad

Meet Emily Chan, our role model in the next BLOOM magazine. Emily, 16, has a rare neuromuscular condition that creates general weakness and breathing problems. She uses a ventilator and a power wheelchair. Here's a sneak peek at part of our interview.

At six months, when Emily was in an acute-care hospital, her parents were asked if they wanted to stop her medical treatment.

“They told me I have a choice,” says mother Peggy Chan. “That I don’t need to keep her. The doctor said they had families who choose to give up their baby because they won’t have any quality of life. I was very mad and I said: ‘Are you crazy? As a mom, you’re not even giving me a chance to try to raise her?’ If I had given her up I would have regretted that decision for the rest of my life.”

Emily lived for six years at Holland Bloorview before her medical condition improved and she was able to move home with her parents. She now uses her ventilator mostly at night. Emily says she likes “all the typical teenager stuff” and wants to go to university to become a child psychologist.

BLOOM: How do you define quality of life?

Emily Chan: It’s living each day to the fullest, being happy. I think everyone deserves to have that chance. The purpose of life is to be happy, to be happy with yourself and what you’ve done and hopefully make a difference somewhere.

BLOOM: What is your life like now?

Emily Chan: I have a great life. I have everything – family, friends, cute guys to look at. Everything is going great in my life. I have pretty good marks at school – an 82 per cent average. I like Facebook and I’m really into (Korean)-pop. I play the guitar and piano and really love doing that. Whenever there’s stress in my life I pick up my guitar and play my worries away. It’s a great stress reliever. I like talking, hanging around, going shopping, going to see movies – all the typical teenager stuff. I love Harry Potter.

BLOOM: What about reading. Do you like those teen romances?

Emily Chan: No, that’s so cliché. I like the deeper, darker stuff. I’m just finishing The Hunger Games.

BLOOM: What are your dreams for the future?

Emily Chan: I want to become a child psychologist. I also want to have a family and drive a Ferrari – don’t we all? But right now I just want to get to university. Living in a hospital for the first six years of my life has given me a broader perspective of things. I got to interact with adults more than the average kid, which made me mature faster. It’s like my brain is 20 when I’m 16. I’ve known a lot of people who had to go through really difficult situations and I’m less quick to judge. I know that even though a person may appear a certain way it’s because of something that’s happened to them in the past. You have to see the person, not just the person they appear to be or how they act. I understand the feeling of being isolated, which will help me understand someone who feels alone for different reasons.

BLOOM: How do you view disability?

Emily Chan: It’s just a part of you. God made you this way for a reason and you have to learn to love yourself. You have to realize that a disability isn’t going to hold you back. My mom always told me was that it doesn’t matter how you do something as long as you get it done. If you have a wheelchair it just becomes another part of you. And sometimes you can use it to your advantage – like running over people you hate!

BLOOM: What advice would you give parents?

Emily Chan: Don’t give up on your kid – no matter how grim the situation might seem. Always stay positive. You have to put in the time and the effort. Kids need their parents to give them love and support. Nurses and doctors will have sympathy, but it’s not the same as a mother’s hug that gives you that warm feeling. Every kid needs that. What got me out of Holland Bloorview was the constant pushing and love and support of my parents. They got me the treatment and the help I needed to thrive. My mom had a drive to bring out my potential and I think every parent should have that. In my opinion, many parents don’t have that devotion anymore.

BLOOM: Is your condition usually progressive?

Emily Chan: I’ve done some research about it and read stuff online about boys who have the diagnosis. It’s rare for a girl to have it. For the boys it’s a progressive condition and it keeps getting worse and worse. I’m really healthy now and I don’t have issues with pain. I think part of it is living at home and not being in a depressing hospital. I have more room to grow and expand on new things and explore what’s out there.

I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities.

One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability.

A neonatologist in the audience made the following comment.

“There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.”

Neonatalogists care for newborns with complex, life-threatening problems related to prematurity, illness or congenital disability.

I think the stigma that intellectual disability is worse than physical disability is widespread, even within the disability community itself.

We can't know if what the doctor said about the pervasiveness of this attitude in neonatology is true. Perhaps she is ascribing her own bias to others. But it would certainly be shocking if specialists trained in the care of disabled newborns held such views.

According to the American Academy of Pediatrics, neonatologists go to medical school for four years, then train as pediatrics residents for three years, then train for three more years in newborn intensive care. That’s a decade of learning.

Is it reasonable to expect that in this 10-year span the attitude that intellectual disability is worse than death would be challenged?

Neonatologists, as part of their training, should be required to have extensive interaction with families of children with intellectual and other disabilities, so they have a firsthand understanding of what life with these conditions is like. I hope we hear from a neonatologist about what kind of exposure to families of children with disabilities is included in their training.

At the Montreal conference we also heard about the Disability Paradox – that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

And we heard about research that shows that the way a health problem is framed influences the decision a family makes about treatment choices. How clinicians order information, the words they choose and even the tone of their voice can have a significant impact on how parents of children make medical decisions.

If a neonatologist were to believe that intellectual disability is a fate worse than death, how could that bias not seep through when conveying this diagnosis to families? Wouldn't that belief run contrary to communicating that a child with intellectual disability has value?

When a life hangs in the balance, I believe parents should receive the most complete information about intellectual disability, including the perspectives of families whose children live with it.