KENRICK Bogle will turn four years old on Wednesday, but he won’t be able to celebrate his birthday like other kids his age. He will be holed up in his bed inside the Intensive Care Unit (ICU) at the Bustamante Hospital for Children where he’s been since he was but four days old.
Like they’ve done every year since he’s been there, the nurses will throw him a party, but there will be few friends and even less interaction for fear of the risk of infection.
Kenrick can’t walk or speak and he can’t breathe on his own. He was born with tracheo-oesophageal fistula, which means there is an abnormal connection between his esophagus and his trachea, in which food in the esophagus may pass into the trachea (and on to the lungs) or alternatively, air in the trachea may cross into the esophagus. The fistula has also led to tracheomalacia, meaning his trachea is floppy instead of rigid.
When the Jamaica Observer contacted Lyndsey McDonnough, the managing director of Market Me Consulting Limited, which has been working with doctors to get help for Kenrick, she explained that the little boy, who is at the developmental stage of a seven-month-old baby, underwent emergency surgery after birth, but three-and-a-half years later he is still in the ICU. He needs another surgery to correct the condition. The procedure comes with a price tag of CAD$500,000 at the Cincinnati Kid’s Hospital in Ohio or Canada’s The Hospital for Sick Children, popularly known as SickKids
“It cannot be done in Jamaica. The Cincinnati Kid’s Hospital has a surgeon who can perform the surgery for an estimated cost of US$378,127. Bustamante was speaking to SickKids and they started the process where they sent over all his documents. I reached out to Sandals Foundation and asked if we could get access to a plane to get him there because we couldn’t afford an air ambulance and we got access.
“However, while SickKids will do the surgery, to house him in ICU there as he recovers will cost [another] CAD$500,000,” McDonnough said. “You can’t save every kid, but the difference between him and life is surgery that can’t be done here. I opened a Go Fund Me page for him — https://www.gofundme.com/KenrickBogle — and I’ve been reaching out to people, individuals and corporate.”
Kenrick’s ear nose and throat specialist Dr Marsha James explained that most pateints with Kenrick’s condition usually recover on their own within 18 to 24 months, meaning the rings in the windpipe get strong enough to keep it open.
“At that point when we saw he wasn’t improving we began to seek help overseas,” she told the Observer.
“He has not been able to ambulate as a normal child. The tube is in his voice box so he is unable to speak, so we don’t know what his voice sounds like. And because he’s been in ICU his vitamin D is down. His calcium and bone development are also poor, which contributes to him not being able to get around as he should,” Dr James continued.
She added: “The surgery would allow for the tube to be taken out of his voice box so he would be able to speak. He would also need a lot of rehabilitation. Remember that the first five years are the development stage and he’s almost at that point. He’s going to be four on Wednesday. He’s been in ICU since four days old, therefore rehabilitation will need to last at least 18 months. This will include speech therapy, occupational therapy and physical therapy. He is responsive, it’s just that he can’t speak. If he is sad, you will see the expression; if he did something bad and the nurses scold him, he will look ashamed. It’s just that the tube is in his voice box.”
The situation has taken a heavy emotional toll on Kenrick’s family. His mother, who declined an interview, has stopped visiting him in hospital. His father Peter explained that the visits gives her nightmares and makes it harder for her to cope. Further, he said, the couple might be on the brink of separation because, although she hasn’t said so, he feels that every time she looks at him she remembers their son.
Mr Bogle confesses that he sometimes feels like giving up too, but he refuses to leave Kenrick. He has been taking stress management classes, he said, and whenever Kenrick gets ill, he stays away from the hospital in order to remember him in a happy state.
“Kenrick is going to be four on Wednesday and he has never seen home,” the father said, the pain evident in his voice.
As for the financial burden, Bogle, a freelance videographer, said thankfully Bustamante is part of the public health system and does not levy charges
“This is very stressing, but the hospital helps out a lot in his feeding. Sometimes it’s just medication that’s not in stock, diapers, wipes, and a special lotion, because of his vitamin D deficiency that I have to buy. That I will have to send abroad to get,” he said, adding that whenever he doesn’t get the chance to visit, the nurses purchase things on his behalf.
Procuring Kenrick’s supplies and travelling between his home in Hellshire, St Catherine and the hospital in Kingston each week can cost Mr Bogle $4,000 or more, depending on how often he visits, he reported. But he is focused on getting his son well and taking him home.
“We’ve tried a couple things before, but we just hope it (the surgery overseas) works out.The only thing beating [us] is the money to pay for the surgery.
Minister of Health, Dr Christopher Tufton said he is in dialogue with SickKids Canada and that the ministry will provide some assistance to the effort, which is somewhat a unique case.
“He has lived at the hospital. He is healthy apart from the specific case. It was quite touching when I first met him and I would like to see him better,” Tufton said.