A mother's sacrifice, Sh6m cost for liver and the battle they ultimately lost

The swollen stomach of the 11-month-old Ethan Nolan suffering from chronic liver disease. [Rodgers Otiso, Standard]

For nearly a year, Lilian Aluoch's life revolved around hospital corridors, medical tests, blood transfusions and the fragile hope that her firstborn son would one day get better.

Since Ethan Nolan was about two weeks old, the 33-year-old mother had barely known what it meant to raise a baby at home. Instead of watching him grow through his first year, she spent months carrying him from one hospital to another, trying to understand why his eyes had turned yellow and why his urine.

She was a new mother when the journey began and never imagined that her first experience of motherhood would involve hospital admissions.

Ethan's condition was eventually diagnosed as chronic liver disease, which progressed to liver failure. By the time he was 11 months old, he had developed severe complications, including recurrent bleeding, dangerously low platelet levels and other signs of advanced liver damage. Doctors told his mother that he needed a liver transplant; a highly specialised procedure that was not available locally for him.

According to the latest WHO data published in 2020, Liver Disease Deaths in Kenya reached 13,405 or 5.09 per cent of total deaths. The age-adjusted Death Rate is 57.44 per 100,000 population ranks Kenya 6th in the world.

India became the family's only realistic destination and the estimated cost was about Sh6 million, excluding flights, accommodation and other related expenses.

Lilian was willing to donate part of her liver to her son, and her family was willing to help. Unfortunately, they did not have the money. The transplant was delayed as the family struggled to raise the funds while Ethan's condition continued to deteriorate.

Then, on August 14, around the time his family had hoped to celebrate his first birthday, Ethan died at the Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) in Kisumu.

Lilian Aluoch, 33, the mother of the late Ethan Nolan at her home in Siaya County. [Rodgers Otiso, Standard]

A child who had spent almost his entire life in hospital would never celebrate his first year. I had been following Ethan's story closely.

Only days before his death, I had sat with Lilian at the Obama Children's Hospital at JOOTRH, listening to her describe the painful journey she had made with her son. She spoke about his illness, the bleeding episodes, hospital admissions and the desperate search for money to take him to India.

There was still hope.The family believed that if they could raise the Sh6 million, Ethan could undergo the transplant and have a chance at life. I left the hospital thinking I would tell the story of a mother fighting to save her firstborn.

Then came the morning call.It was Lilian. Something about the call felt unusual. I asked about Ethan, hoping to hear that he was still fighting and then came the words that broke the hope I had been carrying for the child. “Ethan has rested.”

The news was difficult to process. As a journalist, I had expected to document a journey towards treatment and, hopefully, recovery. I had hoped that by the time the story was published, Ethan would still be fighting and that his family would somehow raise enough money to take him to India.

Instead, I had to change my plans. I travelled from Kisumu to Siaya County, to Alego Usonga, to document his final journey home. I arrived at about 11am.

Tents had been erected at the family compound. A sombre mood hung over the homestead as praise and worship music played in the background. Mourners moved quietly around the compound and a shallow grave had been prepared.

The scene was difficult to reconcile with the story I had been following. Lilian remembers the beginning clearly. Ethan was only about two weeks old when she noticed that his eyes were turning yellow and his urine also appeared different.

Family, friends and relatives during the late Ethan Nolan's burial at their home in Siaya County on August 15, 2026. [Rodgers Otiso, Standard]

She did what any worried mother would do - she sought medical attention and initially, she hoped it was something that could be treated easily but the condition did not improve.

She moved from one hospital to another as doctors tried to understand what was happening. At one point, she says, she was advised that placing the baby under sunlight would help. But instead of improving, Ethan's condition became worse.

More tests followed and eventually, liver function tests showed that something was seriously wrong. He was referred to JOOTRH and later to Moi Teaching and Referral Hospital (MTRH), where further investigations confirmed that his liver was severely affected.

According to 2021 World Health Organisation (WHO) data, liver disease is the eighth leading cause of death in Kenya, and the seventh when Covid-19 is excluded, with a death rate of 23.01 per 100,000 people. That is higher than malaria, which kills 22.05 per 100,000, and heart disease at 18.65 per 100,000.

Liver cirrhosis is the most lethal form, accounting for 19 deaths per 100,000. Liver cancer follows, killing about two per 100,000, and often develops after years of untreated hepatitis or cirrhosis. Alcohol-related liver damage accounts for 0.72 deaths per 100,000.

The diagnosis changed the family's life when she was told Ethan had chronic liver disease that had progressed to liver failure.The family was told that a liver transplant was necessary if he was to have a chance of survival.

Speaking to Health magazine after the burial of her first born in Siaya, she says Ethan's death has left a visible mark in her heart.

“I am the mother of the child who left us. I remember you interviewing us at Obama Children's Hospital at JOOTRH. This child died on August 14, around his birthday. Since he died, life has not been easy. I have never healed,” Lilian says.

Her voice now carries the weight of a journey that began with the excitement of becoming a mother and ended with burying her firstborn.

“We walked through many hospitals. I used a lot of money since he was two weeks old. I have debts everywhere. It has been a traumatic journey. I wished my child would grow well and live a normal life like any other person, but now he is no more.”

For almost a year, motherhood for Lilian meant sitting beside her sick child and there was little opportunity to experience the ordinary joys of raising a baby.

There were hospital beds, consultations, tests and emergencies and when Ethan was at home, the illness remained present.His diet had to be carefully managed because of his condition. His mother had to remain alert to the possibility of bleeding and other complications.

She says the experience became overwhelming and the money she had managed to save went to treatment.

“Since I gave birth, I have spent almost all my time in hospital. This child has not enjoyed the motherly love he deserved. He has been in pain, yet he is so innocent,” she says.

At JOOTRH, Dr Patrick Mayabi, a medical officer attached to the paediatrics unit at the Obama Children's Hospital, was among the doctors following Ethan's condition.

He explains that the child's chronic liver disease had progressed to a stage where several systems in his body were being affected.

Ethan had severe liver injury, thrombocytopenia a dangerously low platelet count and recurrent bleeding. His platelet count had fallen to about 44, putting him at significant risk of bleeding.

The liver plays an important role in producing proteins involved in blood clotting. When the liver is severely damaged, its ability to perform these functions is affected, while complications of advanced liver disease can also cause the spleen to enlarge and platelets to become trapped there.

For Ethan, the result was repeated bleeding from different parts of his body.

Doctors were also dealing with abdominal distension and fluid accumulation, complications associated with advanced liver disease and low levels of albumin, an important protein produced by the liver.

Dr Mayabi says the child's condition had become particularly difficult because he was still an infant.

At such a young age, severe liver failure can quickly become life-threatening."The child also began showing signs of encephalopathy, a complication in which toxins that would normally be processed by the liver accumulate in the body and affect brain function, " Dr Mayabi adds.

The medical team feared that the condition could progress to irreversible neurological damage and for them, transplantation was not simply an optional treatment. It was the definitive intervention that could give Ethan a chance of survival.

“The only curative thing we could do at that point was a liver transplant, which we were not able to do at the facility,” Dr Mayabi says.

But while the family searched for money and the doctors continued providing supportive treatment, Ethan continued to deteriorate.He needed blood transfusions and platelets to manage the ongoing blood loss.

The doctors were trying to keep him stable while the family looked for a way out and in the final days, bleeding became one of the most frightening complications. Ethan was bleeding through his mouth and nose and was also losing blood through his gastrointestinal tract.

According to Dr Mayabi, he would swallow some of the blood, creating another danger as he struggled to cope with his condition.

“The child was bleeding a lot. The bleeding was actually the issue. It was bleeding through the mouth, bleeding through the nose and then ingesting the blood itself. He was choking on the blood,” he says.

The doctor says the child's death was especially difficult for the medical team because of how long they had watched him fight.

Ethan had been sick from early infancy. His mother had spent months moving between hospitals, while doctors tried to find the appropriate interventions.

“You can imagine the stress that the mother had gone through all the movement up and down in hospital, the emotional stress, the psychological stress and even the financial stress,” Dr Mayabi says.

The prolonged illness also affected the medical workers caring for him.Doctors and specialists were in communication with the family, sometimes receiving calls late at night as they followed up on investigations and considered what more could be done.

“He was being followed up by a gastroenterologist and a paediatrician. We were getting calls late in the night, sometimes at 10.30pm, 11pm or midnight, trying to find out if the results had come through and what we could add,” he says.

Dr Mayabi says Ethan's mother became emotionally exhausted as the months went by. “The mother just cried. Even when we tried to talk to her, she would tear up. She had been tired. She had been everywhere, up and down.”

After Ethan died, the loss also affected the doctor. “As a human being, seeing that you have a small child and trying to imagine that these things can actually happen to actual human beings, it is so devastating and emotional,” he says.

For Dr Mayabi, the case demonstrated how complex childhood liver disease can become when definitive treatment is not readily accessible.The child had survived for almost 11 months while the family searched for a solution.

The Sh6 million transplant estimate became the centre of the family's struggle. For a family with limited resources, the amount was not simply a medical bill. It represented flights, accommodation, investigations, surgery, medicines and follow-up in another country.

Lilian says she was informed that the procedure would need to be done in India and that the family had to raise the money themselves.

Health insurance helped with some of Ethan's treatment in Kenya, but the family says it could not bridge the full gap created by the overseas transplant.

His father, Festus Otieno, says the family had already exhausted much of what it had.

“This is my first child, and when the child was two weeks old he started feeling sick. We have used a lot of money and walked through various hospitals, but he never got healed. Now he is no more,” he says.

The family survives largely through subsistence farming. Raising millions of shillings was therefore almost impossible.

“We are peasant farmers. We cannot afford it. We were required to raise Sh6 million, which was like a drop in the ocean for us,” Otieno says.

For the family, the question remains painful: if the treatment had been available closer to home and at a cost they could afford, would Ethan still be alive?

Kennedy Okoth, a public health specialist and Lilian's brother, says Ethan's death should force Kenya to rethink how it handles complex medical conditions.

He says discussions around child mortality often focus on the three delays  the delay in deciding to seek care, the delay in reaching a health facility and the delay in receiving appropriate care.

But Ethan's experience, he argues, demonstrates another gap. The family sought care, they travelled between hospitals and they finally followed referrals. Yet the final treatment required was outside their financial reach.

“In cases of child mortality, we normally talk about the three delays - the delay to seek care, the delay to reach the facility and the delay to obtain care. I think we should look beyond that,” Okoth says. “Once a critical condition has been identified, how is the referral process taking place?”

He believes Kenya needs stronger policies for medical emergencies that require specialised treatment, including organ transplantation.

“Cases that require transplant or overseas treatment should have a cover that can accommodate such emergencies.”

Okoth also questions why Kenya continues to depend on other countries for highly specialised procedures despite having trained medical professionals. “It is unfortunate that after 63 years of independence, a country like Kenya, with good human capital and good brains, still depends on external assistance for such cases.”

Establishing a liver transplant programme requires much more than an operating theatre. It requires transplant surgeons, paediatric specialists, anaesthetists, intensive-care teams, pathologists, radiologists, nurses, transplant coordinators and other specialised personnel.

It requires specialised equipment, blood services, laboratory support and long-term follow-up. Most importantly, it requires a system capable of identifying patients early and moving them quickly through referral pathways.

Lilian was prepared to donate part of her own liver to give Ethan another chance and that chance never came. “I was willing to do anything to save the life of my baby. I was willing to donate my liver to make him live,” she says.

Now, her appeal is no longer about saving Ethan. It is about preventing another mother from experiencing the same pain.She wants Kenya to invest in liver transplantation so children requiring the procedure do not have to depend on fundraising or travel abroad.