The gift of play

Six-year-old Allahana Commock had never known what it felt like to run freely or play without fear of collapsing.

Born with tetralogy of fallot – a rare and complex congenital heart defect – even short walks left her exhausted, dizzy, and prone to fainting spells.

That changed just over two weeks ago after she became one of six children to receive life-saving heart surgery through international charity Chain of Hope at the Bustamante Hospital for Children (BHC).

For Allahana, the operation has restored something most children take for granted: the chance to play.

“She is looking forward to living a normal life,” her mother, Elesia Jones, told The Gleaner.

Jones explained that her daughter’s condition prevented her heart from pumping enough oxygen-rich blood throughout her body, severely limiting her daily activities.

“She gets fainting spells. If she is exhausted, which happens quite often, she faints. She can’t manage to walk [any] distance at all, she can’t play, she seldom does physical activities, and it affects her going to school as well, because a lot of times she is out of it,” Jones said.

The emotional and financial toll has been heavy

A mother of five, Jones said caring for Allahana was taxing, often forcing her to miss work as a hairdresser. She also had to travel regularly from Dressikie, St Mary, to Kingston for medical check-ups and spend $5,800 every two weeks on medication.

“It’s very challenging ... . It tears me up. A lot of the time I can’t get to go to work because of her condition. It affects me real bad at times. But I learnt to cope. I’ve tried to give her my best side,” she said.

Relief came when Jones learned that Chain of Hope would perform the surgery free of cost.

“I was elated because, honestly, I could not afford to pay for her medication. Sometimes, it is a challenge to buy her drugs. And because she has to be dependent on the drugs every day to survive, after a while it was wearing out. Her system got used to it, and it was not as effective as it used to be,” she said.

Now recovering at home, Allahana is doing well.

TRANSFORMATION FOR ROMALIK

Thirteen-year-old Romalik Billett is another child whose life has been transformed. He underwent surgery to correct valvular heart disease – a condition in which a heart valve does not close properly due to thickening or stiffness.

According to his mother, Monique Bennett, the procedure was completed without complications.

Before the surgery, Romalik, a student at Mona High School, struggled emotionally with the limits imposed by his illness.

“He was very upset most of the time because he really wanted to play football for his school ... . I’m like, ‘Remember you’re not so hundred, you feel that way and you do play around, but your heart, we are not so sure about it, so let’s not stress it,’” Bennett said.

Symptoms such as shortness of breath, fatigue, chest pain, dizziness, and heart palpitations forced Bennett to restrict her energetic firstborn from strenuous activity.

“I made the school aware that for PE (physical education), I don’t want him in the sun. He did play football, but just in the little PE,” she said.

“I am grateful, but I still haven’t come out of that caution phase yet. I am more grateful and happy it was done and I don’t have to worry about it, but I am still mindful, and a hope seh di next shoe nuh drop or something, or some complications come up afterwards,” Bennett, who works as a legal secretary, stated.

“We’ve been scoring top of the board.”

HIGH RISK BUT SUCCESSFUL

Meanwhile, Chain of Hope Jamaica General Manager Nola Phillpotts-Brown told The Gleaner that all six children – who had surgeries performed between January 12 and 16 – have been discharged from hospital are doing well.

Stating that this was a “complex case mission”, she noted that the surgeries were conducted by a 16-member volunteer team from Chain of Hope Jamaica and Chain of Hope UK, in partnership with the BHC. They were led by world-renowned surgeon Professor Victor Tsang, who specialises in valve repairs and valve replacements in children and adolescents.

The surgeries were performed between January 12 and January 16 during cardiac surgery mission week, following about two weeks of preparation that included addressing condensation issues in the operating theatre by installing a dehumidifier to keep the environment dry.

“They were mostly very high-risk, complex cases, and so when the results were six successful procedures and the kids are doing well, we are very happy about that,” Phillpotts-Brown said.

She said an initial 12 children were scheduled to undergo open-heart surgery; however, following further assessments, some were deemed unsuitable for surgery based on the complexity, the team availability, as well as the devices needed. She noted that each patient is evaluated over a four- to six-week period to determine their suitability for surgery.

The surgeries and all preparatory assessments are provided free of cost to parents.

“Not all procedures are the same,” explains Dr Cleopatra Patterson, paediatric cardiac anaesthetist and intensivist at BHC, said in a statement.

“We have some babies with complex cases, some with their hearts tied up in knots that we are unable to unravel. There are a few children who have surgery needs for their particular disease that we simply do not have the capacity to treat, due to a lack of specific resources and support. Chain of Hope has helped in these instances, helping us get the children to Canada, the United Kingdom, Europe or Great Osmond Heart Centre in London. They have provided access to both the medical expertise and training that has changed the lives of our children here at the Bustamante Hospital for Children,” she added.

Chain of Hope has also strengthened local capacity by investing in clinical training and skills transfer. It also started a national cardiac nursing intensive care training programme in collaboration with the University of Technology. It sends educators to Jamaica, as well as teaching remotely in collaboration with the UTech educator.

Phillpotts-Brown disclosed that the next mission is scheduled for February 9-13, with the Cardiac Kids Foundation of Florida partnering with Chain of Hope Jamaica. She is appealing to corporate Jamaica to support Chain of Hope Jamaica.

“Help our children, our nation’s children; support the surgeries where possible because we really do need the help,” she said.

sashana.small@gleanerjm.com