April 25, 2024
Mombasa, Kenya
The NeuroKids team met baby Margaret during a weeklong training session at Coast General Teaching and Referral Hospital in Mombasa, Kenya. Margaret’s mother, Irene, was referred to Coast General by a local clinic when Margaret experienced a bacterial infection that led to a significant change in the size of her head. Margaret was subsequently diagnosed with post-infectious hydrocephalus and needed surgical treatment. By pure providence, NeuroKids and Dr. Peter Ssenyonga were at Coast General Hospital that week, training Dr. Ben Okanga in new hydrocephalus treatments. Margaret was one of the first patients at Coast General to be treated with ETV/CPC (endoscopic third ventriculostomy with choroid plexus cauterization).
As Irene remembers, “When the nurses at the clinic told me that my baby’s head was big compared to her age, I didn’t know what to think or what this meant. The only thing I remembered after the conversation was that I needed to go to Coast General Teaching and Referral Hospital and that there, my baby would get the help she needed. So that is what I did.”
“My daughter was so lucky to be among the first children who received the ETV/CPC procedure from the NeuroKids team in Mombasa. I have met parents whose babies had a shunt placed, and the rates at which the shunts have failed or malfunctioned are very high, according to the stories they told me. I feared that for my baby because it meant she may need several surgeries for shunt revision.”
“Now it’s been months since Margaret’s surgery, and my baby is doing great! The NeuroKids coordinator calls and visits to check up on her regularly and I continue with physiotherapy every week.”
After each surgery, the NeuroKids program works to ensure that patients and their families are appropriately followed. A NeuroKids coordinator remains an integral member of the clinical team to make this follow-up care possible. Our accomplished group of coordinators attend pediatric neurosurgery clinics and hospital wards, and conduct phone check-ups and home visits with patients and families to ensure the child is doing well after surgery. Throughout these interactions, they help connect families to resources and any follow-up care they may need, whether at the hospital or within their community.
“I thank God I have a supportive mother-in-law and husband,” Irene continues. “We help each other on this journey together with NeuroKids. My Margaret is doing great as far as the hydrocephalus is concerned and we are happy.”
