In the bustling heart of Nairobi, Grace Mbugua, a devoted mother, found herself on a journey she could never have anticipated. Her son, Christian, was just a year and five months old when their life took a sudden and unexpected turn.
It all began when Christian was younger, around the age of one. Grace and her sister noticed something unusual in his eye – a mysterious glow that appeared when they were changing his diapers. Concerned but not overly alarmed, Grace decided to consult a doctor without bringing Christian along. The doctor, although initially dismissive, suggested they bring Christian for an examination. The doctor’s words lingered heavily, hinting at the possibility of cancer.
The next morning, Grace brought Christian to see an ophthalmology nurse at the eye clinic. To her relief, the nurse dismissed her concerns, assuring Grace that everything was fine. Yet, the glow in Christian’s eye persisted, visible only when he turned his eyes in a certain way. Continuing to look for answers, Grace’s friend helped her book another appointment with a pediatric ophthalmologist, but this time, the doctor advised them to wait and apply a medication to the eyes so that once Christian’s eyes are well dilated a more thorough examination can be performed.
Finally, after the eye was dilated and the room darkened, the doctor used a special tool to look closely into Christian’s eye. What Grace was now able to see even without the tool sent shivers down her spine – with the dilation his eye was fully glowing. The doctor delivered the crushing news: there was a mass in Christian’s eye, and the only option was to remove it. Grace, desperate for an alternative, asked if there was any way to save the eye. However, trying to directly treat the eye, if it was cancerous, could potentially cause the cancer to spread and make matters worse. Faced with an agonizing decision, she agreed to have his eye removed.
Insurance constraints meant they couldn’t choose just any hospital. They opted for Kikuyu Eye Hospital, a place that worked well with their insurance and offered a more affordable solution. An ultrasound confirmed their worst fears: retinoblastoma (RB). There was no time to lose, and Christian’s eye had to be removed immediately.
As the day approached for Christian’s surgery, Grace couldn’t shake the fear that the doctor might make a mistake. She had to remind herself that the doctor’s intentions were never malicious. The day of the surgery was an excruciatingly lonely experience. Christian was the only child in the eye hospital having his eye removed.
The surgery was a painful experience for Grace. In the recovery room, she couldn’t bear to watch as the doctor removed the bandage, revealing a raw, red eye socket where once his eye had been. It was a stark and emotional moment for her, and she excused herself to the bathroom. There, she thought things through and after taking some time to gather herself she realized that despite the absence of one eye, Christian still looked like her beautiful son, and nothing could change the love she felt for him.
Two weeks after the surgery, Grace’s sister came to help with Christian’s post-surgery care. She also introduced Grace to Daisy’s Eye Care Fund, which played a pivotal role in Christian’s journey. The lab results were not encouraging – stage 3 retinoblastoma had completely taken over the eye.
They were referred to Kenyatta National Hospital for chemotherapy. The night of the referral, Christian had to be admitted immediately. It was here that Grace ironically found solace in the company of other parents going through similar ordeals. Their shared stories of children who had lost one eye or even both eyes were strangely comforting in that she now knew she was not facing this challenge alone.
Chemotherapy was not without its complications. Christian’s low blood count posed a challenge, and he struggled with asthma attacks and chest infections. They spent 18 to 20 days in the hospital, followed by brief rests at home before returning for more treatment. The days blurred together, but Grace’s family provided invaluable support during this trying time.
Christian didn’t qualify to use the radiotherapy machine available at Kenyatta National Hospital then because he was under two years old. The family explored the possibility of private hospitals, which had a more advanced radiotherapy machine which could give a lower dose of radiation and meet the requirements. However, the financial burden weighed heavily on their shoulders. They had to pay in cash, and the family rallied together to provide the necessary support.
Through it all, Christian remained resilient. His teachers knew about his condition and helped him adapt to his prosthetic eye. They even taught him how to check his eye on his own. Though he faced some challenges, including many questions from children and friends who hadn’t seen him since his surgery, Christian found solace in visiting other children in the ward with similar diagnoses. He, too, learned that he was not alone in his journey.
Today, Christian carries himself with confidence and grace. When asked about his eye, he proudly shares a bible quote assuring people that he is “fearfully and wonderfully made.” His story, like that of his mother Grace, is a testament to the power of love, resilience, and unwavering determination in the face of adversity.
Grace and Christian hope to be an example to other families and are incredibly grateful for the incredible care given to them by Dr. Kahaki Kimani and the entire team at Kenyatta National Hospital. Kenya is fortunate to have such tremendous resources available to families in need. At KTG, we are grateful that Grace followed her instincts and kept asking questions until she found answers that led her to care just in time!