For families whose children develop advanced liver disease, the greatest challenge is often not the diagnosis itself, but what follows: when doctors know the required treatment, yet it is not available in Kenya.
The case of 11‑month‑old Ethan Nolan, who died after a long battle with chronic liver disease while awaiting a transplant, underscores the gap in specialist care and the heavy financial toll on families forced to seek treatment abroad.
Dr Achieng Adem, a paediatric gastroenterologist practising in Kisumu, explains that chronic liver disease is a long‑term condition marked by ongoing injury to the liver. In its early stages, the liver can compensate for damage and continue functioning, so a child may appear healthy.
However, as the injury persists, fibrosis and scarring develop, gradually impairing the liver’s essential functions and potentially leading to cirrhosis and liver failure.
The liver is one of the body’s most vital organs. It processes nutrients from the intestines, helps regulate blood sugar, produces bile for fat digestion and absorption, synthesises proteins such as albumin to maintain fluid balance in the bloodstream, stores vitamins and minerals, and supports immunity. Severe damage compromises these roles, affecting multiple bodily systems.
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Childhood liver disease also differs in cause from adult forms. Alcohol, a common culprit in adults, is not a factor in infants. According to Dr Adem, children may develop chronic liver disease due to biliary atresia, genetic or inherited conditions, metabolic disorders, autoimmune hepatitis, or drug‑ and toxin‑related injuries. Some of these conditions can arise very early, even before birth, meaning a baby need not live for years before serious liver disease emerges.
“It’s a misconception that someone who has chronic liver disease must be taking alcohol. That does not apply to children,” Dr Adem says, adding that the condition is not necessarily the fault of the child or parent.
Early symptoms can be easily missed. A baby may initially seem well despite an underlying problem. Persistent yellowing of the eyes or skin, especially when paired with dark urine, pale or whitish stools, poor feeding, slow growth, or a swollen abdomen, should prompt medical evaluation.
Not all jaundice in newborns signals chronic disease—it is common and can be harmless—but persistent jaundice with other warning signs may indicate a serious issue.
“If liver disease or injury is not caught early, inflammation, scarring and fibrosis can ensue, leading to cirrhosis and eventually liver failure,” Dr Adem explains.
For children who reach irreversible liver failure, transplantation becomes the definitive option. This involves replacing the damaged liver with a healthy one, or part of a healthy liver from a compatible donor—often a parent in living‑donor transplants.
The procedure is highly specialised, requiring transplant surgeons, paediatric hepatologists, intensive‑care experts, pathologists, transplant coordinators, and other professionals working as a cohesive team.
It also requires specialised equipment, laboratories, blood services and long-term follow-up.
“Liver transplantation is a highly specialised service that demands experienced surgeons and a whole experienced team,” Dr Adem notes.
Kenya has built capacity for kidney transplantation, but liver transplantation remains a major gap. As a result, families are often forced to go abroad, with India becoming a primary destination, alongside South Africa, the United States, and other countries.
For families like Ethan’s, the financial strain is immense. His family was quoted around Sh6 million for the transplant in India, excluding flights, accommodation, and additional care. Estimates cited by the family placed costs at about Sh15 million in South Africa and up to Sh18 million in Italy.
Such sums put liver transplantation out of reach for many ordinary Kenyan families, especially those reliant on subsistence farming or informal work.
Dr Adem argues that developing local transplantation capacity would not only reduce costs but also give patients access to specialist care without the risks and delays of travel.
“Some chronic liver diseases can be identified and treated early, while for others transplantation is the main option,” she says. “We need to develop liver transplantation services within our country, so children and their families do not have to travel abroad.”
However, a transplant is not the end of the journey. Recipients need lifelong follow‑up and medication to prevent organ rejection, as well as careful pre‑surgical preparation to ensure they are strong enough for the procedure. For children like Ethan, that preparation can become a race against time.
The absence of a local transplant service means families may spend months fundraising while the child’s condition worsens. By the time funds are raised, the patient may be too unwell for surgery.
Dr Adem also highlights another obstacle: the lack of reliable national data on childhood chronic liver disease. While the condition is less common than many other paediatric illnesses, exact figures are hard to determine. The small number of cases seen in specialist centres can also contribute to diagnostic delays.
“There is a lack of public awareness,” she says, noting that some children reach hospital only when the disease has advanced significantly, while others may die in their communities without ever accessing specialist care.
For Kenya, the challenge is twofold: to improve awareness and early diagnosis, while simultaneously building the specialist capacity needed to treat children whose disease progresses to liver failure.
Bringing liver transplantation closer to home would not eliminate all the difficulties of complex surgery, but it would remove one of the biggest barriers—the need for Kenyan families to cross borders in search of life‑saving treatment.