It's a desperate wait for children in need of liver transplant

Loud caws from Indian House crows flying above the streets of Utange, some 11 kilometres from Mombasa town, break the silence that is in Rahma Kazani’s house.

Rahma is holding her chin looking at her son, Ayan Mudzo, who has just woken up.

As we settle down for the interview, the one-year-old baby bursts out and makes a loud shrill followed by a staccato cry.

His father is staring at them and he appears in deep thought. Rahma’s face is sullen, but she feeds her baby, anyway.

Before she gave birth to her first child, Rahma had envisioned a joyous future filled with laughter and sunshine.

She had imagined her son being like any other child. But reality shattered those dreams, leaving her staring into the abyss of a strange illness that was new to her vocabulary –biliary atresia, a liver condition that threatened the baby’s very existence. 

Faced with a desperate fight for his life and a mountain of medical bills, Rahma would embark on a journey that now tests the limits of her strength and love. It has been a year and two months of raising a son who is in excruciating pain. 

“We feel like we are on a treadmill going nowhere — just trying to survive,” she says.

Rahma says that three days after Ayan was born, he appeared a little jaundiced, which is a common occurrence in many infants. Jaundice is a condition that causes the skin and the whites of the eyes to turn yellow.

But as days went by, she realised that his stool was pale and his skin and eyes had become completely yellow. His stomach would also swell whenever he was breastfed.

“Anytime I tried giving my son food, it could come out the same way he had taken it in. He used to cry a lot,” she says.

While Rahma wanted to go to hospital to get a second opinion on what his son could be ailing from, doctors discouraged her, saying that jaundice is a normal condition that would ebb away. She was advised to take her son out for sunlight exposure and that he would be alright. 

A few days later, she realised that her baby had dark urine with traces of blood; and that became even more worrying.

When she went back to hospital, the doctors asked her to take several tests to ascertain the actual problem and to identify where the blood in the stool was coming from.  

“I did all sorts of tests —  from ultrasound to blood and stool tests — and I couldn’t stop thinking about the pain my child was going through at that time,” she tells Healthy Nation. 

In the process, something terrible happened. The doctors realised when they were taking the blood samples that the blood won’t stop oozing.

This made them ask for an extra test.

When her baby’s new results came out, Rahma says she felt as though her life had come to a standstill. She felt like the world was revolving around the same place with no hope.

That was when they got the diagnosis for biliary atresia. “This was completely new and complicated. All I was told is that it is related to the liver. I knew I would lose my child,” she says, sobbing. 

Things took an ugly turn when she was told that she needed about Sh4million for her baby to get a liver transplant. A liver transplant replaces the diseased liver with a healthy liver from a donor.

She was asked to stop the baby’s required immunisation due to the excessive bleeding until he was completely healed.

The doctor recommended that the child undergoes Kasai procedure, which is one of the first recommendations to treat Ayan’s condition, and this happened when he was barely two months old.  

They agreed and Ayan had a surgery at Coast General Teaching and Referral Hospital,  which, unfortunately, was unsuccessful.

“Seeing my child undergoing surgery at a very young age was scary but what could I have done? I needed to save his life. I couldn’t imagine the pain he was going through,” she says. 

The doctor later insisted that her baby required a liver transplant and was urgently recommended to a hospital in India.

According to the doctor, the baby should undergo the procedure within three months, failure to which they might lose him. 

The father accepted to be the donor, but with just three months to go, they are racing against time to raise the money. 

“Currently, Ayan is very slow to stand by himself , or crawl due to his condition and  the main impact on him is that he is on a daily basis medication at a very young age,” says Rahma.

“I have been spending almost Sh50, 000 every month for medication and there are tests done frequently that require huge amounts of money. The national health insurer did not help us. This is draining us mentally, emotionally and financially,” says Rahma.

Ayan is not alone. 

In Gacharage ward, Muranga County, about 85 kilometres from Nairobi, Baby Tamara Mambo’s life changed after a surgery she underwent in India. She was also diagnosed with biliary atresia when she was one year and two months old. 

“We went to India in 2020 and my baby underwent a liver transplant. We were grateful then, but when we came back she had complications and now we are required to go back to India for treatment to save her life. We fail to understand what exactly went wrong,” says Faith Njuguna, Tamara’s mother. 

When the world was battling Covid-19 in 2020, Tamara’s family in Murang’a County was struggling to find a cure for their baby.

They say they have spent a lot of time in and out of hospitals with various blood infections. 

Just like Ayan, Tamara’s mother noticed that the whites of her eyes were yellow when she was five days old. But the jaundice prolonged for six weeks even after going to the hospital.

“When I went to the hospital, the doctors said it was normal for a baby to be yellow and that I should just expose her to sunlight. But as a parent, I was not satisfied,” says Faith.

The baby, who is now four years old,  was later referred to Kenyatta National Hospital and admitted for 61 days and after several tests, the results showed that she had high levels of bilirubin (bile pigment) in the bloodstream. 

Another ultrasound was done, which showed that she had a missing bile and she had to undergo Kasai procedure (which corrects biliary atresia), where the surgeon removes the damaged ducts outside of the liver (called extrahepatic ducts).

The procedure also involves finding smaller ducts that are still open and draining bile. The surgeon then attaches a loop of the intestine to this portion of the liver. This allows bile to flow from the remaining healthy bile ducts into the intestine. 

Dr Victor Bandika, a paediatrician and gastroenterologist at Pandya Hospital in Mombasa, tells Healthy Nation that when a child has biliary atresia, the bile flow from the liver to the intestine is blocked.

This causes the bile to be trapped inside the liver and the baby becomes jaundiced. 

The trapped bile in babies can quickly cause liver damage and scarring (cirrhosis).

“Early cirrhosis and liver failure can be prevented by early diagnosis and surgery. Surgery includes taking out the blocked bile ducts and connecting the liver to the intestine to increase bile flow,” he explains. 

Tamara’s mother says that later the doctors said it was too late for her baby to undergo such a procedure and instead she needed a liver transplant before she was 18 months.

“This was the hardest pill to swallow. I needed to do all it took to save my baby given the given period. The experience was devastating when it seemed a transplant was inevitable,” says Faith. 

According to Dr Bandika, the Kasai procedure is not a cure for biliary atresia,  but it allows babies to grow and have good health for several, sometimes for many years.

About 25 per cent of patients who undergo a Kasai procedure do not need a liver transplant.  

“The younger an infant at the time of surgery is, the more likely the surgery will be successful. By the time an infant is older than about three to four months old, surgery is unlikely to be helpful and she or he will definitely need a liver transplant,” explains Dr Bandika.

Tamara’s family was able to raise Sh5 million through social media and she went to India for liver transplant. 

“The waiting period for a liver transplant was pretty long. It was depressing for all of us. You can’t really play with your friends because you might get an infection. Going out in public was also risky but we waited, and waited, and waited, and waited,” says Faith.

But unfortunately, the worst happened. Her daughter was diagnosed with coronavirus and the doctor had to postpone the procedure until she recovered. 

“We had to spend extra Sh900, 000 to cure Covid and after getting well, we went for the transplant. We stayed in theater for 14 hours and after that I was taken to ICU for two weeks since I was the donor and Tamara stayed there for 21 days,” explains Faith.

They stayed in India for four months. While her daughter is now recovering, she says that one of the side effects of the condition is profound malnutrition.

At the age of two, Tamara weighed as much as some newborns do. When she came back, she gained weight from seven kilos to 14 kilos. Her parents were still hopeful she would never need another transplant.

“She came back a healthy child and you would not be able to tell her apart from any other child,” she says.

“Tamara has always been an incredible child. I always tell her she’s the strongest person I know even when I know she doesn’t know what’s going on with her life,” explains Faith.

However, after one year since her liver transplant, she started developing some complications. At the age of two years, Tamara was diagnosed with pressure and diabetes.

The tests also revealed that she had portal hypertension, which is elevated pressure in the portal venous system that leads to the liver.

“The complications took us by surprise. We had just assumed it was one small problem that would get easily sorted out, but it kept snowballing,” she narrates.

Tamara now has to return to India for treatment and the family has to raise Sh3. 5million.

For many patients, the cost of buying medication has been a burden let alone traveling to India for transplant. 

Dr Bandika says that most biliary atresia cases are reported late due to lack of enough awareness and expertise.  

“We are getting there but we really need a lot of investment in terms of manpower and equipment. I can tell you that it is not that easy to identify such a condition as biliary atresia and our labs are not up to standard in most of the government hospitals,” says Dr Bandika. 

He explains that a child with biliary atresia and jaundice cannot properly digest fats. 

“This is because not enough bile gets to the intestine because of liver damage. There may also be loss of vitamins and proteins and the doctors are proposing a special formula and baby diet during the first year of life. For older children, a well-balanced diet consisting of three meals a day.”

As the parents of Baby Ayan and Baby Tamara continue to bear the burden of their children’s battle with biliary atresia, they are urging the government to set up a facility like the one offering liver transplant in India to ease the cost burden. 

According to Dr Bandika, Kenya lacks the expertise and well equipped medical facilities to perform liver transplant.

“Many patients with biliary atresia are referred to India because it’s a cheaper destination,” he says, noting that liver transplant is only done in two countries in Africa- Egypt and South Africa.

“Parents should seek further tests when their babies are jaundiced because the normal jaundice needs to cease by 14 days. They should present their babies in hospitals that can at least do a bilirubin test. Exposing your baby to sunlight will not help,” explains Dr Bandika. 

As the clock ticks, the parents of these two children can only hope they will be able to raise the required amount of money for liver transplant and give their babies a new life and live happily ever after. 

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