Young Briella’s journey after liver transplant

For families navigating biliary atresia, the race against time may be followed by years of medical care, financial strain and uncertainty.

When Briella was born in 2023, her parents had little reason to imagine that the yellowing in her eyes would lead them into a medical journey that would reshape their lives.

On her second day of life, they noticed the yellowing and sought medical attention.

They were told it was ordinary newborn jaundice, a common condition in babies, and Briella was placed under ultraviolet light before being discharged.

But the yellowing persisted. Her weight began to drop, and her parents grew increasingly concerned.

At another health facility, her mother, Pauline Wanyika Karanja, recalls being advised that the baby was not breastfeeding adequately and needed more sunlight.

“We noticed that the situation was actually not changing. The yellowing was becoming more,” she recalls.

Weeks passed before a nurse friend referred the family to a doctor at Kenyatta National Hospital, who referred them to Aga Khan University Hospital in Nairobi.

Further investigations, including a hepatobiliary scan, led to a diagnosis that would change the course of Briella’s childhood: biliary atresia.

Biliary atresia is a rare condition in which the bile ducts, which carry bile from the liver to the small intestine, are absent, malformed or obstructed. Without an effective route for bile to drain, it accumulates in the liver, progressively damaging the organ.

Dr Waceke Ngangakombe, a paediatric gastroenterologist at Aga Khan University Hospital, Nairobi, explains that the condition develops before birth and usually becomes apparent at birth or soon afterwards.

Its warning signs include persistent jaundice, unusually dark urine and pale or whitish stools.

“Once it starts to accumulate in the liver without an exit, it damages the liver, and this then leads to liver failure,” Dr Waceke explains.

The consequences can extend beyond the liver. As the disease progresses, the body may struggle to perform essential functions, including producing proteins needed for normal functioning. Children can experience poor growth and, in severe cases, life-threatening bleeding.

The challenge is that not every case of jaundice signal biliary atresia. Newborn jaundice is common, but persistent jaundice requires appropriate assessment to establish its cause rather than an assumption that it will resolve on its own.

For children with biliary atresia, time matters.

One treatment option is the Kasai procedure, an operation that removes the affected extrahepatic bile ducts and connects the intestine to the liver to allow bile to drain.

It does not cure the underlying condition, and its effectiveness varies, but it can help delay or avoid the need for a liver transplant in some children.

Dr Waceke says the procedure is most effective when performed early, ideally within the first 60 days of life.

It may still be considered later in selected cases, including within the first 100 days, depending on the child's clinical circumstances.

For Briella, however, the procedure did not work.

Karanja says her daughter underwent the operation at about 72 days old, after the family had spent weeks seeking answers. The doctors had cautioned that the outcome was uncertain.

When the procedure failed, the next option was a liver transplant.

At nine months old, Briella underwent the transplant in India.

Her journey illustrates the difficult intersection between a time-sensitive medical condition and the challenges families can encounter while seeking an accurate diagnosis.

It does not establish that every delayed diagnosis leads to the same outcome, but it shows why recognising warning signs and securing timely specialist assessment are critical.

A transplant is not the end of treatment

Following the transplant, Briella began making progress. Karanja says her daughter, who had struggled with feeding, sleep and developmental milestones before the operation, gradually caught up.

But the transplant did not end the family’s medical journey. It changed its demands.

A transplanted organ requires lifelong monitoring and medication to prevent the body's immune system from rejecting it. Briella takes immunosuppressive medication, including tacrolimus, which must be administered at prescribed times and doses. Regular blood tests help doctors monitor medication levels, liver function, kidney function and possible complications.

Because these medicines suppress the immune system, transplant recipients can also be more vulnerable to infections.

For Karanja, this means that caregiving is built around medication schedules, hospital appointments, laboratory tests and constant vigilance.

“The journey is quite difficult as a person,” she says.

For Briella’s family, the liver transplant brought hope, but it did not mark the end of their medical journey.

In July and August 2026, Briella and her family travelled to India for treatment after she developed Epstein-Barr virus (EBV.

EBV is a common virus that usually causes mild or no symptoms in many people.

However, for patients taking immunosuppressive medicines after an organ transplant, infections require careful medical assessment and monitoring.

In some transplant recipients, EBV can also contribute to serious complications, including post-transplant lymphoproliferative disorder, a condition involving abnormal growth of immune cells.

This does not mean Briella developed that complication; her specific diagnosis and treatment should be confirmed with her medical team.

The trip added another layer to a journey already shaped by specialist appointments, regular laboratory tests and the cost of maintaining the transplanted liver.

For Karanja, the responsibility of keeping her daughter well continues beyond the operation itself, requiring her to navigate follow-up care and the possibility of further treatment abroad.

Briella’s experience illustrates an often-overlooked dimension of transplantation: survival depends not only on accessing the procedure, but also on sustained specialist care, timely investigations and the ability to respond to complications.

For families who must seek treatment outside Kenya, each additional medical need can bring new logistical and financial pressures.

After Briella's diagnosis, Karanja left her previous work as an administrator and operations professional to become a full-time caregiver.

She now runs a jewellery business while also helping raise awareness about biliary atresia and liver conditions in Kenya through Biliary Attrition and Liver Care Africa, the organisation she says her family runs.

She describes the emotional strain of watching her child navigate repeated hospital visits while trying to balance household finances and the demands of daily life.

Her brothers have been a crucial source of support, she says, particularly when the pressure becomes overwhelming.

Her experience reveals another dimension of rare disease care: the person who needs treatment is not always the only one whose life changes.

Parents may have to reorganise their employment, finances and family responsibilities around a child's medical needs.

For families managing a condition that requires long-term specialist care, the financial burden can continue long after the initial diagnosis or operation.

Karanja says Briella requires regular tests to monitor her health and medication. Depending on the tests required and the facility used, she estimates that routine monthly investigations can cost between KSh16,000 and KSh20,000. Additional tests may cost more.

These are her reported costs, rather than a standard national price list, and the amount a patient needs will depend on individual clinical circumstances.

She also raises concerns about the affordability and availability of medicines and the financial demands of accessing specialist care.

The family managed to raise money for Briella's transplant in India with support from its networks, including people in their church. Karanja worries about families who lack similar connections or resources.

“Some of us have been in a position of privilege because we have networks that supported us to get funding for the liver transplant,” she says. “You can imagine someone who is living on less than a dollar and has a child with biliary atresia. What happens to that parent?”

Her question points to a broader challenge: access to a life-saving intervention can depend not only on medical need but also on whether a family can raise the money to obtain it.

Dr Waceke says liver transplantation is not currently performed locally in Kenya, meaning children who need the operation must seek treatment elsewhere.

This adds another layer of complexity to care, including the need to raise funds and navigate treatment outside Kenya.

Karanja wants the government to explore establishing local liver transplant services, improving access to affordable medicines and ensuring that families can obtain the investigations and follow-up care their children need.

She also wants healthcare workers at the first point of contact to receive better training to recognise warning signs and refer children for further assessment when jaundice persists.

Briella's story sits within a wider rare disease challenge in Kenya: limited data, difficulties obtaining diagnoses, high treatment costs and gaps in services for patients who need long-term care.

Rare Diseases Kenya (RDK), which advocates for people living with rare conditions, says its network has recorded more than 140 different rare conditions. This is a count of conditions represented in its network, not the number of affected patients or a national estimate of prevalence.

The organisation says many families face prolonged diagnostic journeys, limited access to specialists and the high cost of genetic testing and treatment. Some also need rehabilitation, assistive devices, specialised nutrition and psychosocial support.

According to RDK, Kenya has not yet adopted a dedicated national rare disease policy or established a national rare disease registry.

Without comprehensive data, the scale of the challenge remains uncertain.

Global estimates suggest that rare diseases collectively affect a substantial number of people, although prevalence varies by condition and definition.

Applying global estimates to Kenya can offer an indication of the possible scale, but it cannot substitute for a national count.

The organisation says the Ministry of Health has established a Technical Working Group on Rare Disorders and that discussions towards a national policy are ongoing.

It is calling for a funded national plan, better diagnostic services, improved access to medicines and formal involvement of patients and caregivers in policy decisions.

It also wants health financing arrangements to respond to the actual needs of rare disease patients, including diagnostic tests, treatment, rehabilitation and continuing care.

For families such as Briella's, these are not abstract policy questions.

They determine whether a child can obtain a diagnosis in time, whether treatment can be sustained and whether a parent can afford to keep up with the demands of caregiving.

Despite the challenges, Karanja says Briella has made encouraging progress since her transplant.

Her daughter has reached milestones that once seemed uncertain, offering the family reasons to remain hopeful.

But the future still carries questions about infections, medication, monitoring and the ability to meet the cost of care.

“What worries me the most is if my child will live, if she will survive,” Karanja says, pointing to the risks of infection and the cost of the tests and medicines needed to keep Briella well.

Recognising persistent jaundice, arranging timely assessment and referring children to appropriate specialists can help reduce delays.

For those who need surgery or transplantation, access to treatment must be matched by reliable follow-up and long-term support.