Dr Susan Wamithi is a developmental Paediatrician, one of only three in East Africa, all women.
In a nutshell, developmental paediatrics is a family-centred service that focuses on improving function and quality of life for children with disabilities as well as their families.
According to the 2019 census, 2.2 per cent of Kenyans, (approximately 900,000 people), live with some form of disability; this number could be higher, since some may not have declared family members with a disability due to the stigma related to it, as well as the exclusion of children less than five years old.
To become a developmental paediatrician entails completing medical school and a residency or masters of medicine program in paediatrics and child health, thereafter completing a clinical fellowship program in developmental paediatrics.
More often than not, people gravitate towards certain careers having been inspired by certain experiences, for Dr Wamithi, it was growing up with a cousin who had cerebral palsy.
“It struck a chord with me seeing how her impairments prevented her from fully participating and interacting with us,” she says.
Later on, when she began to practice medicine and interacted with children and adults with disabilities, she developed a desire to improve the lives of children with special needs and support their parents.
At the time, she worked as a senior house officer at the Aga Khan University Hospital’s paediatric casualty. The cases that came through challenged her to become a better doctor and motivated her to apply for the paediatric residency program at the hospital. This led to her life’s calling that was made possible by a fellowship programme offered by the University of Toronto, Holland Bloorview Kids Rehabilitation Hospital.
Often, Dr Wamithi points out, families of children with disability are forgotten as all focus turns on the child, yet such families, especially the parents, are devastated to the point of needing the help of a psychologist.
“There is a lot of guilt and self-drain among parents, and I do my best to let them know that it’s not their fault that their child has a challenge,” she says.
Besides the self-blame, parents also have to deal with many society-induced fears since many are unable to separate African culture from the child’s condition.
“They, therefore, worry about how the child will fit in, and worry that no one will want to marry them due to their disability,” she explains.
In such cases, she makes the parent see the good in their child, the special abilities they have.
“Helping parents not view their children differently when giving a life-changing diagnosis is very important to me for I always want the caregiver to see the child’s strengths more than they see what the child struggles with,” points out the doctor.
To further help families adjust and find some comfort, the Aga Khan Hospital has support groups for parents. Before Covid-19 came about, the families would hold monthly meetings in various churches where the parents and children would socialise.
Dr Wamithi stresses the importance of the community to offer such families support, including siblings of the child, who sometimes get forgotten, with younger ones feeling that their parents are neglecting them since they dedicate more times and care to the sibling with disability.
“Many marriages do not survive the trauma that comes with having a child with disability, in some cases, the man has walked away, leaving the child with the mother, in others, it is the woman that walks out on her husband and child, while some have committed suicide, unable to deal with the overwhelming situation.”
When younger, children with disability are not aware they are different from others, but this changes as they approach teenage, and this awareness may overturn the progress they have made over the years.
“Adolescents especially, struggle a lot because they are aware that they are different, you find a child that was independent regressing, for instance showing selected muteness,” explains the paediatrician.
One case particularly stands out, that of a 14-year-old who had made such good progress, he even played golf. One day, he simply stopped functioning, he shut down, would not talk, walk or go to the toilet and would refuse to eat – he simply stopped doing the things that he had previously done for himself.
“But his mother never gave up, she would faithfully bring him for therapy carrying him in her arms – that case broke me… “
All the treatment and intervention offered is to increase the patient’s quality of life, and this include helping the parents find a suitable school for their child.
Dr Wamithi has seen children who have been turned away from schools due to their disability, while others have had their child labelled “bad” yet it is the environment at school that is not suitable for them.
“We have a list of schools, integrated schools or special needs schools where these children can fit in, but most are very expensive, you will find that it is very expensive to care for a child with disability, which is why there should be tax breaks for parents with children with disability.”
Her dream is to have centralised services for children with disability where all the experts required to look after such a child sit under one roof.
“This is the vision I have for this department, an interdisciplinary clinic where all the professionals required to help these children work together for the good of the child – disability is multidisciplinary, therefore experts need to stop working in silos,” she says.
On any given day, Dr Wamithi starts her day at 7am when she reports to work, and clocks off between 6pm and 7pm. Besides seeing patients, including those at the hospital’s new-born unit, she also conducts research She, therefore, has to make time for that as well.
Besides this, she is in the research committee of the International Alliance of Academies of Childhood Disability, and Head of research committee of the Eastern Africa Academy of Childhood Disability. She is also the project director and technical advisor (Kenya) of the collaboration between the American Academy of Paediatrics (AAP) and Kenya Paediatric Association (KPA), Early Childhood Development Advocacy project.
She spends no less than an hour with each child, during which she does testing and gives the parents feedback. Most of her patients have autism, cerebral palsy, Down-syndrome and delayed speech.
Her patients are not only in Kenya, she also has some from Somalia, Djibouti, Rwanda, Uganda and Tanzania, which speaks of the demand that is out there for the services she and her two other colleagues give.