Wednesday, October 24, 2018

Her son's stroke puts a Nunavut doctor on the other side of care

By Louise Kinross

Family doctor Madeleine Cole works at a 25-bed hospital in Iqaluit doing emergency medicine and delivering babies. She also flies in to remote Nunavut villages to run clinics for the largely Inuit population. But last year, Madeleine found herself on the receiving end of medicine. During an idyllic day of swimming at a Quebec cottage, her 11-year-old son Jayko (above) became seriously ill and was later diagnosed with a brain bleed. Jayko had four surgeries to repair a life-threatening aneurysm in his brain, but the repair caused him to be paralyzed on his right side. “That was the hardest thing that’s ever happened to me,” Madeleine says, noting that her own father died of a stroke when she was nine. After being treated at the Children’s Hospital of Eastern Ontario, Jayko came to Holland Bloorview for two months of rehab.

BLOOM: What was it like to be a mother and a doctor in this situation?

Madeleine Cole:
Most hospitals in Canada are designed for acute-care, and what I learned more than anything else was how hard it is to get care once the child is over the original injury. I had to do a lot of work as a parent to advocate for stroke rehab, because I learned there’s a huge difference between the rehab offered to adults with stroke, and what we offer to children.

BLOOM: Can you give an example?

Madeleine Cole:
Where an adult in Ottawa would receive six weeks as an inpatient with focused rehab, including weekend physio, there was a push to discharge us a week after Jayko’s aneurysm was repaired. As outpatients, we would only receive very limited occupational, physio and speech therapy on certain weekdays. That was inadequate for a child who’d had a massive stroke and complete one-sided paralysis, and it was vastly different from what an adult in Ottawa would have received.

BLOOM: So how did you get to Holland Bloorview?

Madeleine Cole:
It was only because I did a lot of homework and put my advocacy in writing. Initially we were told he was too well for your program, that he had recovered too much.

While we have worked with many wonderful individuals in the system, the system itself often fails kids. In so many ways, geography is destiny. If you compare rehab therapy in Ottawa to Nunavut, it’s 10-fold better. But if you compare rehab at Holland Bloorview to Ottawa, at a program level, it felt a thousand times better. In the letters I wrote, I said I’m fighting for my kid, but I’m also fighting for all kids.

Something has to change with rehab for kids after stroke. I'm not sure when or how, but I'd like to do something about that. Maybe there's a role for me to write an article about that in the Canadian Medical Association Journal.

It's part of a physician's job to advocate for a better and more equitable health-care system. It was odd to find myself doing it for my own child. For families with lower health literacy and less social capital it would be so much harder to navigate the system.

BLOOM: It sounds like being a doctor in your situation was a great advantage.

Madeleine Cole:
I think overall it has been, partly because with knowledge you can be a better advocate. But it was also helpful to me to understand the medicine and science and biology of what was going on, and to know the systems. That was good, because as a parent, you are the case manager. On the other hand, parents who don’t have a medical background might not quite 'get' how serious their child’s situation is.

BLOOM: Because you understand exactly what doctors are talking about, whereas a lay person may not?

Madeleine Cole:
Yes. And I think sometimes not knowing for a parent can be protective, as long as your child is getting good care.

One of the hardest things about brain injury for caregivers in the health system is to balance honesty and not create false hope in parents, but to temper that with the fact that this is not mathematics—it’s not two plus two is four. Despite MRIs and imaging, you can’t entirely know what the endpoint of rehab will be. 

Whoever came up with your branding about possibilities is brilliant. When things are unpredictable, it's not helpful to shut doors.

One of the hardest things for me as a parent is not knowing how much to push rehab—whether it’s occupational therapy or physio, formal or informal—especially in a child, like all children, who needs to enjoy life.

BLOOM: How is Jayko doing now?

Madeleine Cole:
We’re a year out in rehab and recovery and physically he can run, he can swim and gym is his favourite subject. He became left-handed, and went to hand camp at Holland Bloorview to continue to regain his right hand abilities, which was excellent.

At the same time, I have to allow myself to be sad, because he was a very, very artistic child before, and that’s difficult with the change in his fine-motor skills [cries].

In many ways he’s the same as he was—just a toned down or calmer version. He was an extreme extrovert, and he’s still really socially capable, and everyone likes him. There are cognitive changes that are subtle to people who don’t know him and largely invisible. School has become a challenge and I'm adjusting to it all. On endless levels, he’s completely wonderful and happy and I’m so grateful for that.

BLOOM: It sounds like you’re torn between being grateful for how well he’s doing and grieving what has happened.

Madeleine Cole:
I think I find it hard to balance being positive and present-focused, and allowing myself to be sad to the losses.

I think there’s a combination of true grief for the loss of some of the things that probably won’t come back, but also trauma from the acute-care experience.

Everyone was shocked at how well I coped when we were at CHEO. We had no control, apart from advocating, and our child could die anytime—that was a real possibility. It was just letting go, and going day by day.

His acute-care was excellent, especially the intensive care.

But I wish acute-care hospitals had established peer support from other families, or concrete outreach to parents through a handout that says 'This is going to be very difficult for your whole family, try not to forget your child's siblings.' Or a phone number you can call if you need professional help. I think there's a lot to be said for learning from other families' experiences—in person and through stuff that they've written.

We had family in Ottawa and a huge circle of support—people who could bring us food or spend time sitting with our child, so we could get out or take our other kids places. I thought, over and over, about all the Inuit families we saw at CHEO who were a million miles from home, with no extended family. My partner and kids are Inuit.

I know that the experience of grief and trauma isn’t linear, and I tell myself it’s a positive thing that I’m able to cry now and be sad. I know the general pattern of families after these things should be in the direction of getting better, but there are always waves, and ups and downs.

BLOOM: What helped you cope when you were inpatients at Holland Bloorview?

Madeleine Cole:
I really benefited from the green space, the ravine, and Sunnybrook Park. I brought my running stuff, and I’d run in the ravine. Being able to exercise and be in the forest.

The Family Resource Centre was good—and even that it’s called that is pretty powerful. I wish in acute-care that there was something that says ‘A child’s illness is a family’s illness,’ to validate how difficult it is for the whole family. I took out a bunch of books and read things in your Family Resource Centre. I also appreciated the mindfulness group and Anne Maria was an excellent social worker and support.

Art therapy for kids and parents, and visiting musicians, and hospital clowns were part of the incredibly good care that we experienced.

Over the long term, I’ve found arts and books and music help you cope. Songs that I often listen to that help me feel better, but also let me be sad, are Crying by Madison Violet and Bruce Cockburn’s Song 40 Years In The Wilderness. There’s also a super cool woman from Winnipeg called Iskwe, and her songs Healers and Soldier are quite awesome.

BLOOM: What was most challenging during your inpatient stay?

Madeleine Cole:
One of the things I learned, and that ties in to being a better doctor, is how incredibly important, and disrupted, sleep is when you’re in a hospital setting. Because you’re sharing a room, there’s a lot of beeping and noise at night, and sleep wasn’t great. Because I have family who live in Toronto, we were able to switch to the brain injury day program after a month, and sleep at their house. To be able to sleep in a normal house, with extended family, was wonderful.

BLOOM: How did Jayko’s siblings cope?

Madeleine Cole:
I knew this wasn’t going to be a short-time problem, so after Jayko became ill, we moved to Ottawa. It might have been forever, we didn't know.

Many families in Nunavut couldn’t do that. They’d have to leave their children with a grandparent. I was able to figure out schooling for my other kids in Ottawa, and the schools were supportive and helpful.

Jayko’s siblings coped incredibly well. I forced each of them to see a psychologist, or a child life specialist, once. Today, they’re really adjusting, and not worried and not sad. They talk about how Jayko is fine and happy. I’ll occasionally say ‘Don’t you see how he’s different?’ And they’ll say ‘Yea, he’s different, but he’s fine.’

BLOOM: Did Jayko ever ask why this happened to him?

Madeleine Cole:
Yes, he did. But he knows that there’s nothing that he did, or that we did, to cause it. It was just bad luck—that some people are born with things different in their blood vessels. He knows that they were able to put some glue in his aneurysm, and close off that blood vessel. His neurosurgeon was great at showing him MRIs and cat scans and explaining things.

BLOOM: If you had to give three pieces of advice for other parents in a similar situation, what would they be?

Madeleine Cole:
First, let yourself be sad sometimes. Second, actively look around for positive things—or beauty or goodness—every day. And as much as it may be difficult, try not to neglect your other kids.

BLOOM: What happens to families who have kids with significant disabilities in Nunavut?

Madeleine Cole:
There's a real lack of services. When you have only two speech therapists for the whole eastern Arctic, they might have a visit to your community twice a year. There are no sidewalks here and no public transportation. Iqaluit is not friendly to people in wheelchairs. If I had a child with high needs, I would have to leave the North, even though I would be super sad about it.

On a positive note, I have found rural and remote communities to be more accepting and inclusive of people with disabilities. Nunavummi Disabilities Makinnasuaqtiit Society is one resource to families in Nunavut living with disability.

BLOOM: Are there ways in which you approach things as a doctor differently now?

Madeleine Cole: When it feels right, I share some of what I've gone through as a parent in the last year. I know that my ability to empathize with patients has deepened through many experiences, such as miscarriage, birth, death and illness and disability in loved ones. Having been there myself I hope makes me a better physician at some level. I hope I can be a better ally and advocate to families living with disability.