Parents share big dreams for first liver-transplant patient

AN ENERGETIC Zaiden Clarke tried to get his father’s attention during a telephone interview with The Gleaner. As he intensified his efforts, his father Jermaine Clarke cheerfully shared that his son is very playful.

“He is a lot of trouble right now. He wants to assist, everything him wah fi help,” he said.

But as he basks in his now six-year-old son’s enthusiasm for life, Clarke said he is filled with gratitude.

As a baby, Zaiden was diagnosed with cholangitis, a condition in which the bile ducts in the liver are blocked. As a result, the liver becomes damaged and many vital bodily functions are compromised.

At 13 months old, Zaiden was the first baby in Jamaica to have a successful liver-transplant surgery. The surgery was performed at the Bustamante Hospital for Children by surgeons from Nemours Children’s Health System, headquartered in Jacksonville, Florida.

Chief surgeon at Bustamante Hospital For Children, Colin Abel, told The Gleaner that nine more liver-transplant surgeries have been done since the first one in 2018. These surgeries are done in collaboration with The University Hospital of the West Indies, Kingston Public Hospital and the Nemours Children’s Hospital.

Between six and seven children are born in Jamaica each year with liver disease that can be addressed with transplants. Abel said five patients are currently on the waiting list for surgeries, and the infrastructure and services at the hospital for these surgeries have been “adequate so far”.

Clarke, who was 25 years old at the time, was his son’s donor, a decision he said he would make again.

“When mi wake up and see him, how everything look pon him, especially his eyes, cause they were like yellow, yellow, when mi come outta surgery and see him, full white,” he recalled.

Since the surgery, Clarke said he has been his main caregiver, as his son lives with him in Adelphi, St James. The child’s mother, Tannila Gordon, lives in John’s Hall in the said parish.

HANDS-ON CARE

He said his job as a customer service representative with a call centre company allows him to work from home, and he is able to give his child more hands-on care, which has been punctuated by frequent hospital visits.

During the first days after the surgery, he said Zaiden was prone to fevers, but, with medication and time, those subsided.

“The most difficult part of it would have been us following up with the doctors because we had to take Zaiden to do regular visits, we’d have to go to the hospital once, twice per week. But when he just came from the hospital we were having a little bit of challenges with him, so whenever he went outside to play he would catch a little fever and stuff like that. He was admitted about once after he came out, so pretty much I can say he has been coping very well,” his mother Tannila Gordon said.

However, she said Zaiden, who is the second of her four children, is also experiencing delays in speech. But it is an issue that both parents are determined to tackle, and she said they have recently sought the expertise of a speech therapist.

“He’s not able to cope with surroundings that are crowded, and that is noisy,” she added.

In the meantime, Clarke said he also tries to give his son additional tutoring at home.

“He is smart, he ketches on easily. But tru him just a ketch on with the playing and ting, him nuh really quiet like them (other students) to sit down and listen, he most wah up and dung, a just dat a di difficult part right now,” Clarke shared.

Young Zaiden also has to take immunosuppressive medication twice daily which is provided freely through the National Health Fund, JADEP programme.

But although he has shown a lot of progress over the years, Clarke said he yearns for the day his son no longer has to take any medication.

“Every day mi pray fi when mi go a one a dem review and dem seh him no longer haffi deh pon medication, cause right now him a come from like 13 medication to only one,” he said.

And as Gordon basks in watching her child grow, she finds herself relishing in every moment.

“Everytime I look on this child, I hug him, I tell him ‘come and kiss mi’, and I know that it must have been a blessing,” she said.

“We are definitely blessed. It could not have been anything else but God, Zaiden means ‘he’s the lucky one” so I think it’s very symbolic that he was a special child and God favour is up on his life.”

sashana.small@gleanerjm.com