A mother’s sacrifice of love

Overwhelmed by more than $1.4 million in medical debt and watching her teenage son grow increasingly despondent each day, Charlotte Nembhard has made the difficult decision to offer him one of her kidneys in the hope of giving him a fighting chance at life.

“I really want him to be able to have a future. He deserves that. He is a wonderful boy. I can’t see myself without him,” the devoted mother said in an emotional interview with The Sunday Gleaner last week.

Her 16-year-old son, Carl Blake, was diagnosed with kidney disease as an infant. While adults may develop the chronic illness as a result of lifestyle factors, some children are born with it due to abnormalities in their kidneys or urinary tract.

Nembhard recalled her baby boy, just 10 months old, being struck by a high fever and crying nonstop. Alarmed, the single mother rushed him to the hospital, but the care he received was minimal.

Over time, his fever fluctuated between intense episodes and brief moments of relief. Her motherly instinct told her that something was seriously wrong. One night, Nembhard noticed that his face had become unusually puffy and rushed him back to the hospital, demanding further tests. Those tests revealed a dangerously low blood count.

“We don’t know how he is breathing, how he is alive … . He was just lying there. His eyes were so white [and] he was crying; no tears coming, nothing,” she said.

Carl was transferred to Bustamante Hospital for Children, where additional tests showed fluid building up in his kidneys and that one of the organs responsible for eliminating waste and toxins was smaller than the other.

He would end up spending much of his early years at the Bustamante Hospital for Children, remaining hospitalised until he was four, Nembhard recalled.

“He lived there. He went to school there. Everything. At one point, I thought he wasn’t gonna come home,” she said.

But he did return home and managed to live a relatively normal life until he turned 14.

a grille gate had hit

him on his side

One day, Carl returned home from school, reporting that a grille gate had hit him on his side, causing bruising. It was the start of a new chapter in his life, marked by deteriorating health.

“I didn’t think anything of it because I wasn’t feeling any pain at the time. It was two weeks later when I realised that I wasn’t eating or drinking anything and I had short-term memory [loss]. My body was swelling up. I couldn’t remember anything, really,” Blake recalled.

Worried, his mother took him to the hospital twice, where he was given medication and sent home.

When those treatments did not work, he sought medical attention once more. This time, the doctor ordered a series of tests and X-rays, which revealed fractured ribs and advanced kidney deterioration, which led to renal failure.

Carl was readmitted to the hospital, where he was initially placed on peritoneal dialysis, a procedure where a cleansing fluid is inserted through a tube into the stomach area to remove waste products from the blood.

Recently, due to the ineffectiveness of peritoneal dialysis, he was switched to femoral dialysis, where a tube is inserted into his neck.

As Carl’s primary caregiver, 36-year-old Nembhard, who previously ran a shop, has been unable to work due to her demanding role. She sometimes has to travel with her son from their home in Spanish Town, St Catherine, to the University Hospital of the West Indies (UHWI) in St Andrew for dialysis three times a week. Each session costs $7,500 and lasts four hours, adding to their emotional and financial toll.

Nembhard, who also has a younger child, has received assistance from the Jamaica Kidney Kids Foundation (JKKF) to help cover the costs of Carl’s care.

Dr Maolynne Miller, founder and chairperson of the foundation, told The Sunday Gleaner that JKKF supports about 50 children across Jamaica with financial aid for medication, blood tests, and surgery.

The mom is also grateful for the incredible support she has been receiving from relatives and Carl’s school community, who have helped to finance his care.

Natasha Sampson, a parent of a student at Wolmer’s Boys’ School, has, essentially, become a second mother to Carl, helping Nembhard with his care.

“There are some teachers, through Google Classroom, some of them will post things. Some have been quite accommodating and have offered to assist him at the end of the school day for him to catch up on his labs because he is doing all of the science subjects,” Sampson explained.

This support is crucial as Carl has explained that focusing on school and playing games helps him cope with the psychological toll of his chronic illness.

“When he misses school, his [blood] pressure goes up because he worries about the fact that he is missing school,” Sampson told The Sunday Gleaner.

dreamed of

becoming a doctor

Nembhard, who is in the process of doing blood tests to determine if she is a match for a kidney transplant, pointed out that Carl once dreamed of becoming a doctor, but lately, she has noticed him losing sight of that dream.

“It’s really hard to see him going through all of this and I can’t do anything to help him. I am praying to God. I’m just praying that I’m a match. I pray and ask God every day that I am a match. I’d give him both my kidneys. I don’t care. He has suffered; he’s suffered so much,” she said, fighting back tears.

“He doesn’t really get a chance to be a child. He is scared to go outside because he thinks he might get hurt. He doesn’t play with his cousins anymore. He just stays in a corner by himself,” she added.

Dr Rebecca Thomas, a paediatric nephrologist at the UHWI, told The Sunday Gleaner that there are currently seven children under 16 receiving dialysis at the hospital. She emphasised the profound mental health impact of chronic kidney disease on these young patients.

“I’ve had children who ... don’t feel life is worth living, but it can also be where they just act out. ... They will be aggressive, they won’t take their medication, they won’t do what they’re supposed to do ‘cause they feel as though even if they try their best, it’s not going to fix their kidneys completely and they’ll have to do this forever,” Thomas said.

A kidney transplant would offer these children much-needed relief, but Thomas noted that that kind of surgery would be very expensive.

“Just the initial admission to the intensive care unit is probably about $3 million,” she said. “A kidney transplant, in the majority of cases, would save them from a lot of the suffering that they have to go through.”

sashana.small@gleanerjm.com

How you can help

Anyone willing to help Charlotte Nembhard with her son Carl’s medical expenses can contact her at charlottenembhard@gmail.com or 876-875-2938.