Children who have eye cancer in Africa grow up with labels such as “weird” or “different.” Some are said to have the “evil eye.” Most have to struggle with stares and teasing from other children wherever they go. For baby Bisrat, whose name means “blessings” in Ethiopia’s official Amharic language, the first subtle signs of eye cancer were the rapid movement of his eyes, noticed by his maternal grandmother within one month of his birth. The discovery was almost accidental. Every time Bisrat’s grandmother called out his name and used her fingers to direct his eyes, she noticed a sharp glowing light in his right eye. She insisted that his parents, Ermias and Netsanet, take him for a check-up. At their local hospital, the doctor who had assisted in Bisrat’s delivery laughed off the parents’ worries. He said their baby would outgrow the random eye movement and the light they saw in his eyes was normal.
But Ermias was not convinced. He decided to take his son to the Menelik II Eye Unit in Addis Ababa. The first doctor who saw Bisrat was very surprised because eye cancer is uncommon in Ethiopia. An ultrasound immediately confirmed that Bisrat indeed had retinoblastoma in both eyes. But Ermias wanted a second opinion, just to be sure there was no mistake. So, they set off for Black Lion Hospital, also in Addis Ababa, with the child. The doctors advised immediate surgical removal of both eyes to protect the boy’s life. In shock, Ermias and Netsanet shared this information with their parents but Bisrat’s grandfather resisted the move to remove his grandson’s eyes. He, instead, suggested they pray over him at church and trust that God would bring healing. Within a short while though, Bisrat’s right eye became larger and even his grandfather began noticing the change, prompting him to accept that Ermias and Netsanet should seek medical help.
His father in law’s reluctance made Ermias more determined than ever to find an alternative to eye removal surgery. Using the internet, he found a hospital in Sweden willing to treat Bisrat, but the cost of more than one million Ethiopian Birr (US$75,000) was beyond his reach. Another hospital in Thailand was willing to help, but again the cost of treatment and distance discouraged him. Ermias and Netsanet almost gave up, because they could not afford the treatment. For a week, they were greatly tormented– they lost sleep, could barely eat or even work.
But what is this Cancer of the Eye?
Retinoblastoma is a fast growing cancer that affects children from infancy and can form in one eye (unilateral) or both eyes (bilateral). A common early sign is the white ‘glow’ in the baby’s pupil that Bisrat’s grandmother noticed. Often, this is dismissed as a reflection of light. The cancer is caused by changes to the RB1 gene that happen in the normal process of cell division. Healthy retinal cells multiply out of control and form a tumour. Sometimes, this can happen while the eyes are developing in the womb. This cancer is no one’s fault and it is not contagious.
Four in every ten children have a form of retinoblastoma that can later on be hereditary because they carry a damaged copy of the RB1 gene in each cell of their body. However, only 10% of children in this group actually inherit the condition from their parents. This is called congenital retinoblastoma, and most affected children develop multiple tumours in both eyes. As all the cells in the body have the changed RB1 gene, these children also have a higher risk of developing cancers elsewhere in the body throughout life. In the remaining 60% of children who develop retinoblastoma, the cancer is caused by changes to the RB1 gene in just one cell of the retina. These children always have only one tumour in one eye which is often diagnosed when the child is older because the RB1 changes take longer to happen. Untreated, the cancer fills the eyeball, blocking the flow of liquid within the eye. Resulting pressure causes extreme eye pain. If the eye is not quickly removed, the cancer can spread to the brain, bone marrow and lymph nodes in the neck.
Babies’ Parents Have to be Keen
Dr. Kahaki Kimani, a lecturer at Nairobi University and doctor at the eye unit heading the Kenyatta National Hospital (KNH) Retinoblastoma team explains that in its early stages, the cancer has no effect on a baby’s health. Spotting the disease almost entirely depends on the keen observation of the child’s parents or care-giver. “In the early stages, the baby is not in any pain or discomfort,” she says. “The change in the eyes is so gradual that it is very likely the mother will miss it.” Indeed this is what happened to Bisrat. Only the repeated interventions of his grandmother and comparisons with his cousin, born at the same time prompted his parents to take action.
Almost giving up, a colleague at The Civil Service College of training in Addis Ababa, told Ermias of a website he had found containing information about the strange illness of his son. Mesrat had stumbled upon the Daisy’s eye Cancer fund website. Ermias immediately began combing through its pages for clues as to how his son’s eyes could be saved. He emailed Abby White, a survivor of bilateral retinoblastoma and founder of Daisy’s Eye Cancer Fund, who devotes all her time to the goal of optimal opportunity for children and families’ worldwide who are affected by this rare childhood eye cancer. Within two days, Ermias had sufficient information on Retinoblastoma and a direct line to its treatment. Though not in Ethiopia, it was a huge momentary relief. However, he continued to worry about the cost of treatment, but through the work of the Daisy’s Eye Cancer Fund (DECF) in Kenya, baby Bisrat was assured of treatment. Ermias and Netsanet hurriedly packed and departed for Nairobi, where the fortunes of their first born child were to change drastically.
Good-News, but Trying Indeed
Upon arrival at the Jomo Kenyatta International Airport, the young distressed family was received by the DECF-Kenya team. CEO and co-founder, Brian Ouma encouraged Ermias and Netsanet to “stop worrying about the cost of treatment and instead, concentrate on Bisrat’s wellbeing.” This was a phrase they were to hear repeatedly in the course of their three month stay in Kenya. The couple learnt much on their sojourn in Nairobi; not the least of which is that treatment for retinoblastoma is available in Kenya!
Bisrat was immediately admitted at the Kenyatta National Hospital (KNH) ward 9D, which is specifically dedicated to children with retinoblastoma. The extent of Baby Bisrat’s cancer demanded immediate removal of his left eye. The cancer had spread to fill his entire eyeball, but had not yet extended beyond the eye. His life depended on immediate surgery. Bisrat’s right eye also contained tumours, but there was hope that this eye could be saved with chemotherapy combined with special laser and freezing treatments. Dr. Kahaki, highly specialised in retinoblastoma, examined the eye regularly during treatment to monitor progress. The tumour was in the macula which controls central vision and close to the optic nerve - it must not be allowed to invade the optic nerve as this is a direct route to the brain- the doctor said. Dr. Kahaki assured Ermias and Netsanet that she and her team would make every effort to protect Bisrat’s life. Like in all such cases, the doctors put life above the preservation of eye.
Bisrat began chemotherapy. Often called chemo, this treatment uses powerful medicines to destroy cancer cells. Bisrat was scheduled for six cycles of chemo over a period of five months. The first was so hard on the 4 month old baby that his white and red blood cell count decreased drastically. He had to receive a blood transfusion and daily injections to reduce the risk of serious infection. The next chemo treatment was delayed by a week while he regained strength. After the second chemo treatment, Bisrat needed another transfusion to boost his red blood cell count. He cried for three days from nausea and bone pain caused by one of the drugs. His terrified parents sought reassurance from the doctors. Netsanet, 27, says this was the biggest scare of her life. She confided these fears to her older sister who comforted her, telling her to take heart because if it was God’s will, Bisrat would heal. The third cycle of chemo was much easier on Bisrat, but the tumours in his eye were not responding to treatment. Doctors feared the cancer could invade the optic nerve and recommended that the eye be removed to ensure Bisrat’s life was saved. Soon after, the doctor stopped the chemo altogether because she felt it was not necessary anymore. The right eye had to be removed and he was fitted with artificial eyes (prosthetic), at the Kikuyu Eye Unit.
Early Warning Signs and Intervention
Dr. Kahaki suggests that parents use a camera flash in dim light to detect the white glow in the eye, an early warning sign. “The pupil dilates [expands] in dim light. The flash light bounces off the white tumour surface and appears as a white glow in the photograph,” she explains. “In natural light, one can easily miss it as the pupil is not expanded.” Another early sign of this cancer is a squint. The child’s eyes also do not track together but instead look in different directions. Babies under six months old often grow out of this, but their eyes should be checked to rule out cancer. If the white reflection is visible to the naked eye (most often at dawn or dusk), it is likely to be at a very advanced stage. Then, it poses a serious risk to the child’s life and it requires emergency care. Other symptoms of the advanced disease include a red, painful, inflamed or swollen eye and vision loss which may manifest as fear of walking down steps or distress when the infected eye is covered.
The good news is that retinoblastoma is entirely curable if contained completely within the eye. Statistics from Daisy’s Eye Cancer Fund indicate that more than 97% of children treated in developed countries are cured today. However, once it escapes the eye, it becomes much more difficult to treat, especially, if it invades the brain or bone marrow. Then, chances of cure become remote, even with aggressive treatment in developed countries.
Kenyatta National Hospital cares daily for many children with retinoblastoma, receiving about 60 new cases per year. Globally, retinoblastoma affects 1 in 15,000 live births; suggesting that about 90 children are newly affected each year across Kenya. Treatment depends on the stage of the cancer. Surgery is the best way to save a child’s life and is the standard first treatment throughout the world when only one eye is affected. An implant fills the space previously occupied by the eye. The child is then fitted with an artificial eye, which looks like a real eye and maintains the shape of the socket. When both eyes are affected, attempts to save at least one eye can be made if the cancer is not yet a threat to the child’s life through treatments such as external beam radiotherapy, chemotherapy, laser and cryotherapy (small, very cold probes to freeze and kill the tumour).
In developing countries, less than 20% of children survive, primarily due to late diagnosis, refusing the life-saving surgery, poor access to additional treatments and support, and poor compliance with follow up care. “This is a very poor outcome for a completely curable cancer” says Dr Kimani. Her specialist team includes ophthalmologists (eye doctors), a paediatric oncologist (children’s cancer doctor), radiotherapist and pathologists (who look at eyes under the microscope to determine if the cancer has spread). Unfortunately, of the retinoblastoma babies received in KNH, only one in four survives because they come in too late for treatment to be effective or they fail to complete all prescribed treatment.
In some cases the white eye glow is mistaken by primary doctors as cataracts, a more common eye condition that is not life threatening and usually does not prompt urgent specialist referral. “Retinoblastoma is not yet well known in Kenya” says Dr Kimani. “There are even medical workers who do not know about it.” She adds that efforts are being made to create awareness, especially, among mothers.
Retinoblastoma is documented as the second most common cancer affecting children in Africa, after leukaemia, which is the most common, worldwide. Treatment is readily available in Kenya- any ophthalmologist (eye doctor) can diagnose the cancer and remove an eye to protect life. Eyes can be saved in Nairobi when the tumours are small.
Creating Awareness about Eye Cancer at the Grassroots
In Kenya, the ministry of Health Services through the division of Ophthalmic Services headed by Dr. Michael Gichangi has been instrumental in producing and distributing posters with pictures that are of great assistance to both parents and medical personnel on the ground to identify retinoblastoma. In addition, the division of Health Promotion has included information on retinoblastoma alongside that of immunisation in the newly launched Mother and Child Health (MCH) booklet, which is easily available in all primary clinics in the country. “If a mother notices the white glow or that the eyes don’t follow movement together, she should have the baby checked,” says Dr Kimani. “The sooner retinoblastoma is confirmed, the better the chance of saving the child’s life, and even sight if both eyes are affected.” Chemotherapy is done to reduce the size of a large tumour so that laser or cryotherapy can be used to finish it off,” she explains.
Eye removal surgery is the first option when only one eye is affected. When both eyes are affected, every effort is made to save at least one eye and removal of both eyes is reserved only for when the eye cannot be saved and the child’s life is at risk. Following treatment, the child will grow up healthy just like any other child. “Again, this healthy life after treatment is possible only if the cancer is caught in good time. Children with congenital retinoblastoma should be followed closely as they are at risk of developing other cancers throughout life” cautions Dr Kimani.
A Touching Experience
What was their experience like at the hospital? Ermias and Netsanet are full of praise for the nurses in ward 9 D. “They are very friendly and took a special interest in Bisrat, probably because he was the youngest in the ward” Ermias says. “The nurses were really good to us,” Netsanet volunteers in her stuttering English. “They always took time to assist me in cleaning Bisrat’s eyes and always responded positively when I needed something,” she adds with the help of her husband’s translation from Amharic. “The one problem we experienced was that the nurses were powerless at night when there was urgent need for a doctor,” Ermias interjects: “When Bisrat cried non-stop for three days we had a real difficult time. He collapsed at 2am and we rushed to the nurses. They told us to wait; the doctor on call would come. Throughout the night we kept vigil with Bisrat. The doctor on call only turned up in the morning. I would suggest that the nurses be empowered to reach the doctors whenever there are emergencies. The ward should have a direct line that reaches out to the doctors to facilitate the handling of emergencies.”
He says in Ethiopia, it was very difficult to reach a decision because their families interfered with a lot of advice. Their parents and friends, sometimes, even neighbours wanted to advise them on eye cancer, which none of them understood! He adds. “Once we came to Kenya, it was just the two of us. We shared all decision making. Even my decision to give up my job back home was reached with Netsanet’s full understanding and backing,” he says with a light in his eye, showing the admiration he has for his loving wife. “If it was not for his strength and perseverance I would have given up,” Netsanet says admiringly of her husband.
Support from Every Corner
Ermias explains that they were in constant communication with their parents, who in turn shared the information with their extended family. And when he sent them pictures of the eye cancer patients in their ward, he says there was an outpouring of support and promises of prayer from everyone at home, including their priest at the local Church. This obviously touched him very deeply, for he composes himself and continues that in Nairobi, they only had to worry about the medical bill of Baby Bisrat, which was rising each day. He, however, declares that the constant support of Daisy’s Eye cancer Fund officials allayed their worries. “Indeed with the help of some members of the Ethiopian community in Nairobi, Daisy’s Eye Cancer Fund raised money to not only offset the hospital bill but also to take care of our other needs!”
He adds that the entire Daisy’s Eye Cancer Fund team made their stay very comfortable and they felt cared for, reducing their feelings of homesickness. “The Ethiopian community was very supportive. They offered prayers in the Church for Bisrat and us; they cooked meals for us and came to visit us every day. On Sundays we took turns to go to Church. This not only strengthened us spiritually but also gave us reason to continue looking to God for Bisrat’s true healing.”
What has this Experience done to their Marriage?
Ermias Kibreab, 31, is a lecturer at The Civil Service College in Addis Ababa and Netsanet is a housewife. With the weight of their son’s serious illness and treatment in a foreign country, one wonders how they managed to keep it together. But Ermias explains their relationship thus: “From the start, Netsanet and I shared everything. Every bit of information I got, I made sure my wife understood it. When Bisrat was diagnosed with eye cancer, I took time to explain to her all I knew about it.” He says, sometimes, they would sit at the laptop researching and he would translate into Amharic for her to easily understand. “This has been a special experience, I will let my wife explain” he adds, looking at his wife with a wink. Netsanet blushes and giggles with pleasure as she urges her husband to go on and share with us, but he insists she gives her views first. Ermias and Netsanet have been married for one year and seven months.
“Bisrat’s sickness has lifted us beyond expectations, it has strengthened my love for my husband and increased my admiration for him,” Netsanet volunteers with encouragement from her husband. “He stood by us, Bisrat and me. Even with no other man in the ward, he did not shy from doing anything for me and the baby, even bathing the baby! Even more, his willingness to help me understand what was happening to our boy was just marvellous!” she says, tears flowing down her cheeks. “If I was asked to marry again, I would marry Ermias!” she concludes. In turn, Ernias says their child became a priority over everything else. “I was ready to lose my job if my employers did not want to give me leave. The experience has filled me with a lot of admiration for my wife, especially, We are now fully aware of the challenges ahead of us with a child who is blind, and we are ready to bring him up in the best way possible.”
Their advice to parents with children suffering from Retinoblastoma is to seek help immediately they suspect their child has an eye problem for it is only curable when detected early. For husbands and wives he poses a challenge: "If you cooperated to bring the child to this world, why not cooperate when a challenge like this faces you? Men, put away your useless pride and stand by your wife and child. I may not be the best example, but find a way of making sure your family is properly catered for, especially in such a difficult time,” Ermias stresses as Netsanet smiles, nodding to every word from her husband. “We are happy because we have tried our level best to save his vision. Had both eyes been removed without trying any medical treatment, it would have been a wound for us,” Ermias concludes that now they have a beautiful story to tell him as he grows up.
Dr Kahaki Kimani, who supervised Bisrat’s treatment during his entire time in Nairobi, hails the family as extraordinary. She emphasises that having both parents involved in their child’s care is of immense value, not only to recuperation of the child and reducing parental stress, but equally to the treating team. “When parents work together, decisions are easily reached and the regime of treatment is administered without a lot of resistance, giving the child the very best chance of cure and a long, happy, healthy life.”
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