Body organs going to waste as patients wait for years

Did you know a dead person can save your life? A healthy heart, lungs or liver can be extracted from the deceased and give you a second chance in life.

In fact, within six hours of someone’s death, a healthy cornea can be removed from the eye to gift another person sight.

But, in Kenya, this is easier said than done. Organ donation has for long been shrouded in controversy. When it comes to consent, family members disregard the will of their dead kin and organs end up going to waste. That superstitious beliefs also get in the way, does not help the situation.

The stigma surrounding the whole process, especially for corneal transplant, is one of the major challenges beneficiaries have to deal with. One has to often deal with the mockery that comes with seeing through the dead person’s eye.

Timothy Mbuthia, 25, is privileged to have a pair of eyes that can appreciate the world’s beauty. He would be blind if not for two corneal transplants. “Getting my first cornea transplant to my right eye back in 2011, when I was in high school, was an eye-opener,” says Mbuthia, who works at the Lands ministry.

“It was the first time I saw how girls looked. As early as 2001, while in Class One, I couldn’t see one side of the board. At home, I had to stand next to the TV to be able to faintly make out the figures,” he adds.

Goat eyes

Like many people, placing a name to what ailed his eyes in 2007 was a relief. “It was one thing to be diagnosed with keratoconus but it was another to be told an emergency cornea transplant was the only way to stop me from going blind,” he says.

Mbuthia recalls how shocked he was when he realised he would be forced to register at Kenya Society for the Blind (KSB) to sort him out for his Kenya Certificate of Secondary Education examinations in the event the imported cornea was not found.

“I considered studying braille just to be prepared,” he laughs, adding, “I was honestly very scared. In 2014, three years after my first transplant at Kikuyu Eye Hospital, my left eye gave out and I went back to square one.”

The transplant cost his family a whopping Sh250,000 all out of pocket. The second one, done in 2015 at Lions SightFirst Eye Hospital in Nairobi at the same cost, was fully funded by the National Hospital Insurance Fund (NHIF).

“The cornea is not just a gift from the dead, but life itself. Up to date, my grandfather still believes I have goat eyes,” says Mbuthia.

Lydia Kerubo*, who does not want her real name revealed for fear of being mocked, tells HealthyNation she would be blind were it not for the gift of corneas she now uses to see.

The 32-year-old from Kisii is one of the Kenyans who have undergone surgery to replace their damaged corneas with those harvested from a dead person. She received a pair of corneas imported from India for both eyes.

At 12, she was also diagnosed with acute keratoconus. Then, all she could pick out were colours. Everything was hazy and she could not see far. She spent 20 years on the donor waiting list in Kenya. “I wore glasses throughout, but my sight was worsening. My eyes were itchy because I kept rubbing them,” she recalls.

Withdrawn and angry

The doctor said she had three months before she went blind. The only solution was a corneal transplant. “I became withdrawn and angry. I couldn’t believe I was about to go blind.”

Fortunately, the two corneas were imported from India though they were not fixed at the same time. They were done three years apart. “I thank God because none of the corneas was rejected. And within a year, I was back to work,” says the secretary in a leading law firm.

The procedure cost the family around Sh250,000 for each cornea, a high amount for a majority of patients. The family had to pay cash for it.

Dr Christopher Wangalwa, a cornea retrieval specialist at Lions hospital, defines keratoconus as a condition where the cornea bulges outward and downward like a cone. He says normally the cornea is dome-shaped, like a ball. “Frequent rubbing of the eyes due to allergic reactions, dry eye syndrome, insufficient production of tears and undeviating pain in the eyes are among other symptoms. Unfortunately, many Kenyans, especially in rural areas, remain unaware of this condition relating it to witchcraft,” says the specialist.

Keratoconus often starts in teenage years. It can, however, begin in childhood or in people up to 30 years old. Although rare, people 40 years and older can also suffer from the condition.

Dr Wangalwa says with only three local cornea retrieval specialists in the country, everything is done pronto. The field needs two experts at a time, therefore, as soon as they get a harvest call, they heed it. On arrival, they get the consent form signed by the family.

Thereafter, they review the donor’s medical history before testing the blood to rule out infections like Hepatitis, cancer above the jaw and HIV. Once proven fit, it is harvested and stored in a freezer. “The cornea is selected by cell count and age. Younger people need younger donors of at most 40 years since they have a higher life expectancy. Unfortunately, many of them jam the waiting list as many donors are 70-year-olds,” he says.

“The cornea is transplanted to a recipient in a 45-minute to one-hour surgery, but only the cornea is transplanted not the whole eye. Total healing takes about a year,” the specialist says.

Eye bank

He tells HealthyNation Kenya has never had an indigenous eye donor except for Kenyans of Asian origin. “Few aboriginal cases who pledged before death even with the family’s knowledge have never been a success. Many cultures believe God will ask them where their corneas are at resurrection,” he says.

Such issues remain a challenge in organ and tissue harvesting. Each minute wasted pleading for these from the family means another person losing their sight or dying in case of organs like the heart. After six hours of death, the cornea is rendered useless if not retrieved.

According to Elizabeth Mbugua and Stephen Rukwaro of Lions hospital, there are competent surgeons in Kenya who can restore sight. Surgical facilities are also available, but there has been a shortage of donors.

As a way of addressing this gap between supply and demand, the first-ever eye bank was established in 2007 at the Lions hospital to obtain, medically evaluate and distribute donated corneas for use in transplantation, research and medical education.

The bank facilitates cornea transplant at a minimal cost.

According to the World Health Organization, in Kenya, according to a 2018 report by the KSB, there are about 350,000 blind while another 750,000 are visually impaired. “Kenya performs about 200 corneal transplants annually,” says Dr Mbugua.

Last year, about 400 Kenyans received corneas across the country at various hospitals among them Lions, Tenwek Hospital, Light House for Christ Hospital in Mombasa, Kikuyu Eye Hospital, Moi Teaching and Referral Hospital, Upper Hill Eye and Laser Centre and Kisii Eye Hospital.

Liver aspirator

There were about 600 people on the waiting list there.

For Peter King’ori, calling for a family meeting to request for an organ might have been the most difficult conversation to imagine. “Thanks to my younger sister, it’s a conversation I never had,” says King’ori, a 34-year-old liver recipient from Nairobi.

He was sickly since 2003. He later confirmed the source of his pain in 2011 to be a large intestine disease called ulcerative colitis.

Gradually, this condition caused another one called primary sclerosing cholangitis that eventually damaged his liver in 2016. “I woke up one day and I couldn’t stop scratching my body. I was itchy all over especially my hands and feet. It was followed by frequent vomiting and weight loss,” King’ori remembers.

Despite a diagnosis at Aga Khan Hospital Nairobi confirming his fears, his mother and he travelled to India for a second opinion on June 24, 2016. The diagnosis was the same.

“When I heard that there was a solution to end my brother’s pain I was elated,” says his sister Ruth Muthoni, 29.

Ruth, at the age of 24, donated 67 per cent of her liver to his brother, on August 8, 2016 in India. “The hurdle of raising around Sh7 million (Sh4 million for the transplant and Sh3 million for the tests and upkeep) from family, friends, and well-wishers was intense. The psychological trauma, especially on my mum, was worse,” she narrates. “These were her two babies who could either make it or not.”

On January 9, 2015, KNH announced it had purchased a liver aspirator for transplants. This was to help lower the cost of liver transplant to about Sh1 million and Sh3 million.

However, the excitement did not last long after news that it was short of Sh300 million to fully operationalise it. “Covid-19 also forced KNH to put on hold liver transplantation,” says Wang’ombe.

Law on donation

But what does the law say about organ donation?

Laws exist on living donors who wish to give an organ to a relative, but none covering those who wish for their organs to be harvested after they die.

The Human Tissues Act allows for the harvesting of organs from a dead person for scientific research or medical treatment. Such a donor must have pledged to donate his organs prior to his death. However, the act gives the dead person’s relatives a right to object to this harvesting.

“Donation after death was supposed to bring hope to many organ recipients thanks to the enactment of the 2017 Health Act.

Unfortunately, this has not been so given it is yet to be operationalised,” says Nancy Wang’ombe, a transplant coordinator at Kenyatta National Hospital.

She says that not only doesn’t the Act vouch for non-related living organ transplants (where an organ is not from a recipient’s relative), but it also fails to define the nuts and bolts like death, which is pivotal in expediting deceased transplantation.

“Currently, we have limited ourselves to kidney transplants while other non-communicable diseases like liver disease are skyrocketing daily,” she adds. “The Act also allows people to pledge in their wills. But the wills are sometimes read after the burial, which is too late.”