As one of three developmental pediatricians in East Africa, Susan is a rare resource
By Louise Kinross
Dr. Susan Wamithi grew up in Nairobi, Kenya. Her medical studies took her from Alabama to Grenada to England to Nairobi to Toronto, where she did a developmental pediatrics fellowship at Holland Bloorview. In 2016, she told us that when she was a child, her cousin with cerebral palsy drew her to work with children with disabilities. In 2019 she returned to Nairobi to become the first developmental pediatrician at Aga Khan University Hospital. She is one of only three such specialists in East Africa—all women. We talked about her new role.
BLOOM: What is a typical day like for you?
Susan Wamithi: I'm a faculty member at Aga Khan University hospital. As a hospitalist, so if I'm on call, my day starts at 7 in the morning when I see newborns on the newborn unit, or children who have been admitted. Four times a week I have a clinic that starts at 9, and I will see children with a range of special needs including autism, cerebral palsy, Down syndrome and genetic disorders. Once a week I see all of my hospital post-discharge patients in clinic.
BLOOM: If you're only one of three developmental pediatricians in East Africa, people must come a great distance to see you?
Susan Wamithi: We have people who come from different parts of Eastern Africa and all over the country. I have patients who come from Sudan, Uganda, Tanzania. I work for a private university, so the people who come work for corporations with health insurance, or are referred locally by pediatricians.
BLOOM: What is the greatest challenge?
Susan Wamithi: The way our system is set up is different from Canada. If you don't have health insurance, you're paying out of pocket. Some insurance companies only pay for a consultation with a doctor, but not for allied health services like occupational and physical therapy and speech therapy. The greatest challenge is figuring out where to send a parent if their child needs therapy, where they can afford the care. In the last 18 months I've developed a network of allied health professionals and I always find a way to figure out how to reduce costs for the families. The greatest challenge is the financial constraints of the family.
BLOOM: What's the greatest joy?
Susan Wamithi: It's seeing parents accept what is going on and being able to access services for their child and seeing improvement. It's having family members accept their children just as they are.
BLOOM: How do the services compare to those in Canada?
Susan Wamithi: Children in Canada have more access to services. But another big difference is working with a multi-disciplinary team. When I was at Holland Bloorview, I might be in the same room with an OT or a speech therapist when seeing patients. Here in Nairobi, we have to figure out a way to pay all of the clinicians who come into a clinic, and that's very expensive for families. We're trying to set up several developmental clinics in the country, so that we can have everyone together. But it's difficult to figure out how everyone gets paid, and the insurance companies dictate that.
I always make sure my families have access to care, even if it's not under my institution. So, for example, if they are cash-paying and the OTs are cheaper outside my hospital, I will refer to a clinician in the community. I will have phone or e-mail conversations with an OT to come up with a plan, and then they'll send me three monthly reports if they're not in our system. The funding is very individual, based on what type of provider the family has. Often insurance only pays for doctors' services, not allied health services. The public hospitals that are funded by the government run differently from a private hospital setting.
BLOOM: What about supports for parents?
Susan Wamithi: Parent-led organizations have really taken off nicely in Nairobi. We have a Down Syndrome awareness group and Rare Diseases Kenya and we have a group called Through The Roof, which allows all organizations to come under their umbrella, and they support parents of kids with any kind of special needs. They've set up the system so parents have other parents they can talk to, and they even have research they're doing with different universities locally and abroad. They have really helped caregivers accept who their children are and they support them in different ways. For example, they have a legal framework for those who need pro bono legal care. They work very closely with the National Council for Persons with Disabilities to ensure children with disabilities are getting tax breaks, and looking at tax breaks for their parents. They're doing a great job. Whenever I have a newly diagnosed patient I hook the parents up with the support group. They need to feel like they're not alone and not struggling by themselves.
BLOOM: How do cultural views about disability impact families there?
Susan Wamithi: It depends. We have 40 plus tribes in the country, and also many religions, so it depends on how they view disabilities. There's still a lot of blame for women because they gave birth to the baby and the idea that it was something they did. There's a lot of work being done by health-care providers and parent organizations to reduce the stigma. A week ago I was on one of the Christian TV channels where I was invited for Down syndrome awareness day and it was broadcast nationally. We had people calling in to share the myths they had been told about the cause of their child's disability: that you didn't pay a dowry or you didn't breastfeed enough or it was in your genes. Our job is to educate that disability is not anybody's fault, and it doesn't come from being a bad family. I once had a parent share about domestic violence and women being chased from their homes. We have to explain that it's a random event that has nothing to do with the person carrying the baby.
Some families have decided to have what I'd call a coming-out party. They invite all members of their extended family to come in and explain the child's diagnosis as a way of reducing stigma. I know one family had a barbecue.
I always invite the grandparents to come into my clinic because if we can get them on board, they can often shield the child and parents from the pressures or stigma of society.
BLOOM: If you could change one thing about children's rehab in Nairobi, what would it be?
Susan Wamithi: Access to services without having to worry about whether your insurance company is covering something. I wish we could find a way to provide care that is not expensive. I would love to change the current financial constraints.
BLOOM: What did you value about your fellowship at Holland Bloorview?
Susan Wamithi: The faculty knew I was going back home, so right from the beginning, I was asking questions about what I would need to do here. As much as I was learning with everyone else, they were also tailoring their feedback, given that I wouldn't have access to everything we have at Holland Bloorview. They helped prepare me and that's the reason I'm able to implement what I learned and cope with all of the uphill challenges that come up.
BLOOM: Could we change our program to better prepare fellows for work internationally?
Susan Wamithi: I feel like I spoke my mind as to what I wanted to get out of the rotation and take back home, and how I would need to do things differently. I think it would be helpful to make that part of the curriculum—how you adapt to different cultures.
BLOOM: So when you have an international student and you're talking about practising in a different system, you embed those examples into the curriculum for future students?
Susan Wamithi: Yes. So everyone learns it. The other thing about being in Toronto was you get people from all over the world, and something I found beneficial is learning to work through interpreters. I've had interpreters come to my clinic and I found I was able to adapt that easily for myself and my clinic because of my experience at Holland Bloorview.
