A cousin's memory fuels this Kenyan trainee
By Louise Kinross
Susan Wamithi grew up in Nairobi, Kenya. But her medical studies have taken her from Alabama to Grenada to England to Nairobi to Toronto. She’s now in her second year of a developmental pediatrics fellowship at Holland Bloorview. She plans to take what she learns back to Nairobi to develop the first program indevelopmental pediatrics—caring for children with a variety of physical anddevelopmental disabilities—at Aga Khan University Hospital.
BLOOM: What drew you into developmental pediatrics?
Susan Wamithi: I grew up with a cousin who had cerebral palsy. She passed away when she was 12. She had spastic quadriplegia and my aunt used to bring her over and carry her up the stairs into our house. She was always smiling and she had really nice hair, so I would braid her hair. Now that I’m learning more about pain in cerebral palsy, I wonder ‘When was she in pain?’ And how did my aunt manoeuvre the transport system, because she didn’t have a wheelchair? We weren’t made to feel she was different from us, and we accepted her disability.
I also had an interest in medicine. When I was eight I was in a road traffic accident and I was hospitalized. I was curious and I loved science, and there was a nurse who explained everything she was doing and that got me interested.
BLOOM: How did you decide to work with children?
Susan Wamithi: I had a neurology professor who motivated me to pursue a career in developmental pediatrics. He talked about the great work that parents in Kenya were doing for their kids with disabilities. Mothers rallied together to have walks where they raised funds for different therapies. Our system is both private and public, but you still have to pay a certain amount in the public system. When I expressed interest in developmental pediatrics, I learned that the dean of medicine at Aga Khan is a Canadian. I met with him and he told me about this program.
BLOOM: Why did you choose Holland Bloorview?
Susan Wamithi: The fact that it’s family-centred. When I looked at the website, it’s seeing the children with their families and seeing the type of support families get. Seeing the funding families get for adapted equipment. That tied in with what happened with my cousin. I kept wondering whether those resources weren’t available to my aunt. I’ve never asked. I wanted to see what those supports looked like. I’m always thinking about how I can take what I’m learning here back home to help our families, where we don’t have enough resources.
BLOOM: Are there many developmental pediatricians in Kenya?
Susan Wamithi: There are only two that I know of. I’m being sponsored by Aga Khan University.
BLOOM: What is a typical day like here?
Susan Wamithi: We’re on blocks of rotations in different clinics. So I may be in the neuromotor or child development clinics.
BLOOM: Do you meet with the families on your own?
Susan Wamithi: Yes, we see clients on our own and then we go back with the staff and present our work. It’s a training program, so if you forgot to ask something, the staff will teach you. You have objectives and you’re taught how to manage different disabilities and the resources that are available here and elsewhere. We provide very individualized care based on a child’s needs.
BLOOM: What is most challenging?
Susan Wamithi: Delivering bad news to parents. I’m a parent myself, and you can’t imagine the type of grief that they go through. I want to be able to give some hope, and find ways to support families so they continue to see their child’s strengths. Some parents will cry the whole time, and others will ask questions and accept that ‘This is it, what’s next?’ If we’re using an interpreter, I always hope that what I’m saying is being interpreted in a sensitive manner. You kind of share their grief. What’s been hard for me is coming from my work as a general pediatrician, where a child has a sore throat, I give them an antibiotic and they come back and say ‘My throat is fine.’ There’s nothing I’m going to write here that’s going to change what happened to the brain in a child I see, and the consequences we’re seeing. That’s emotionally draining.
BLOOM: Do you do anything that helps you cope?
Susan Wamithi: I’m spiritual. I had to come to terms with the fact that I don’t know why this happened to this child, but at least there’s some support I can give them. I ask God to give me the wisdom to know what words to say to this parent. I feel this is such a pivotal point for them, and I don’t want them to change how they see their child. My biggest fear is that the parent will just see what the child can’t do. Or that the parent won’t believe what I’m saying about the diagnosis, and the child won’t be linked up with the right resources. I have to be creative to find a way to take a parent through this journey. From the first time we sit down, I need to gain their trust, and make them see I’m on their side as an advocate for their child. When I give the diagnosis, it’s not me against them, but us helping the child.
BLOOM: What do you love about your work?
Susan Wamithi: I love being able to support families to see their children differently. That’s what I’m passionate about. That comes from my background with my aunt, who was always cheerful. She’d come and bake with us and her daughter was right there and included. I love seeing children light up when I ask them what they’re doing for the summer, because we’re allowing them to be children and go to camps and enjoy their life. I love finding out about resources for families.
BLOOM: Have your thoughts on disability changed since you came here?
Susan Wamithi: Back home I was a pediatrician. So if I suspected a child had autism, I would refer them to a clinic, but I never knew what resources were available in the community. What I’ve learned here is how to support families in finding different funding agencies. In Kenya, we have organizations that raise funds for cerebral palsy and autism. When I go back, I want to work with these organizations to make sure newly-diagnosed patients are connected with them.
BLOOM: If you could change one thing about the health system, what would it be?
Susan Wamithi: The waiting times. Imagine the parent whose pediatrician says ‘I think your child has autism,’ and then you have to wait six months to get a confirmation from me. I worry about how that parent is sleeping at night, and how it impacts how they interact with their child. Do they become depressed?
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