Between Shadow and Light: Young Lives in Jeopardy from Retinoblastoma

Hannah’s Story

In a small, rural village in southern Africa, Rachel notices a peculiar white reflection in the left eye of her 8-month-old daughter, Hannah.  It’s most noticeable at dusk, while feeding or bathing her.

At first, Rachel dismisses the fleeting glow as no one else sees it.  She is distracted by the daily struggle to provide for her family, including her late sister’s two children.

By the time Hannah is one year old, the white reflection is more pronounced, now noticed by other family members.  Hannah shows no signs of pain, vision issues, or developmental delays, but Rachel and her husband, Jonathan, feel uneasy.  They consult a traditional healer, who prescribes a herbal ointment which they apply twice daily.  The glow persists.

When Hannah’s eyes begin to appear misaligned, Rachel seeks advice from a community health worker.  He says the squint is normal; she will grow out of it, and the glow might be a sign of infection.  He prescribes antibiotic drops.  They have no effect, and the glow persists.

Shortly before her second birthday, Hannah becomes increasingly unsettled, frequently rubbing her eye.  The eye becomes red and swollen, prompting Rachel to take her to the nearest public hospital.  She walks nearly an entire day, carrying Hannah on her back – the money saved on transport will help pay the hospital bill.

At the hospital, an eye doctor quickly diagnoses retinoblastoma – eye cancer.  He explains that to save Hannah’s life, her eye must be removed.

The consultation is short and no support is offered.  Shocked and frightened, Rachel returns home with her daughter, knowing she must first discuss this with Jonathan.  With no understanding of the surgery and recovery, they imagine its effects, and resolve to save money for a second opinion in the city.

By the time they reach the city, Hannah’s eye has continued to swell, now protruding from the socket.  An empathetic doctor at the private eye hospital takes time to explain retinoblastoma and the risk to Hannah’s life.  Rachel and Jonathan begin to understand, but they still have many questions about the surgery, and they can’t afford the hospital’s treatment fees.  In despair, they go to a mission eye hospital, still hoping for a different diagnosis or treatment options.

For the third time, doctors explain that Hannah has eye cancer, and her eye must be urgently removed.  She is referred to the city’s main hospital, which has the facilities for this surgery.  Hannah is now two and a half years old – nearly two years have passed since Rachel first noticed the glow.

At the public hospital, Hannah’s doctor explains the surgery again, and the impacts of not removing her eye.  The surgery is finally done two days later, and the following week, Hannah’s family return home.

Though a follow-up exam is booked for one month later, its key role in Hannah’s care is not explained.  Financially drained, and believing the worst is behind them, her parents do not attend the appointment.

One year later, Hannah’s eye socket begins to swell, and back at the city hospital, Rachel is told the cancer has returned.  Hannah’s doctor finds the pathology report for her removed eye, but it says only “retinoblastoma”.  There is no information indicating tumour spread outside the eye, and the need for prompt chemotherapy after the surgery.

Treatment options are now limited, but Hannah begins chemotherapy, at great expense.  Rachel must make the heartbreaking decision to leave her little girl alone in the hospital, returning home to look after her other children and help earn money to pay the bills.

Reluctantly, Rachel and Jonathan remove the two oldest children from school to save some money.  High school fees, uniforms, books, and other expenses are too much when there are big medical bills, and the children’s help growing and selling produce will bring in more funds.

Hannah fights hard through months of gruelling treatment, but the cancer is too advanced.  She dies aged nearly four and a half years, far from her loving family.  In a final gut-wrenching blow, the hospital refuses to release her body for burial until the medical bill is cleared.  Her entire family is left traumatised by their experience, and financially ruined.