When Brandon McTaggart smiles, it’s a wide, bright, sunny smile – the kind of smile you would expect from a four year old without a care in the world. Brandon has plenty of reasons not to smile, but he still does.
Since the day he was born, it has been one complication after another for this blue eyed little boy.
The fact that something was not right became apparent when he failed repeated hearing tests as an infant, says his mother, Michelle McTaggart.
Doctors said he had suffered a stroke while in the womb, which had affected brain function. However, his mother also questions whether the oxygen deprivation he suffered right after the birth might have caused his developmental delay.
More extensive tests were carried out examining brain patterns and eventually he was subjected to an MRI. “That’s when they found out that his cerebellum, the little part in the back of the brain that controls balance and coordination, I can’t remember it was either non existent or it grew a certain amount and then stopped,” recalls Mrs McTaggart.
When his DNA tests came back perfect, his condition was classified as cerebral palsy – an umbrella term for “disorders that can involve brain and nervous system functions such as movement, learning, hearing, seeing, and thinking,” according the US National Library of Medicine.
In Brandon’s case not only does he have vision and hearing impairment and developmental delays, but any coordinated muscular action is also extremely hard.
“He can’t talk, he can’t walk, he can’t sit up. He can barely have enough control to play with toys,” says his mother. Even the smallest muscular movements pose a challenge for Brandon. “Its not a big expectation that he will ever be able to chew, but I hope at least he will learn to swallow a little better.”
Because he can’t sit up on his own, but has learned to roll, when not strapped into this high chair, Brandon’s mother has to hold him all the time, to stop him rolling off the couch or bed.
In his first year, Brandon visited the hospital more than 72 times. Doctors found that he suffered from chronic acid reflux, which had been causing him to cry and scream when put in certain positions. He therefore underwent surgery in an attempt to both alleviate the acid reflux and also to insert a feeding tube into his stomach, as he could not take in enough food to sustain him otherwise.
He will remain on acid reflux medication for the rest of his life, and will receive most of his food via the tube in his stomach.
But that is not the extent of his troubles. Brandon is also prone to full body seizures, especially when he has a fever. In the past year he has also developed sleep problems and can only sleep for around four hours at a time. He is now on two additional medications for this.
Coping with Brandon’s medical complications is bound to take its toll emotionally, but the family are resolutely positive and cheerful in that respect. It’s the financial toll they find harder to cope with.
Brandon’s PediaSure formula and diapers alone cost the family $500 each month and are not covered by his medical insurance or through Social Services. Taking care of him is, of course, a full time job and more, and Mrs McTaggart is unable to go out to work, leaving the family of four to survive on a single income. Brandon’s father works all the extra hours that he can, says Mrs McTaggart, but medical insurance covers so few of their expenses, there is very little respite from the financial worries.
Simple things like a weighted blanket, a chair other than a wheelchair for him to sit in, or a communications board that might allow him to convey basic wants or needs, are things Mrs McTaggart can only dream of right now.
If he loses a hearing aid, or if, as it turned out, his glasses were the wrong prescription entirely, the insurance only pays for one set every two years. The hospital pharmacy, says Mrs McTaggart, frequently runs out of his medication, forcing her to purchase it elsewhere and wait for reimbursement from insurance.
Brandon’s insurance only covers him to see doctors at the hospital. Cerebral palsy is not a common condition in Cayman, however, and doctors here are not particularly familiar with it, says Mrs McTaggart. Brandon has not seen a neurologist in two and a half years because unless there are specific symptoms, his insurance will not cover the trip to the US.
The family therefore do not know what sort of improvements, if any, they can hope Brandon to make, or even what kind of life expectancy he has. Such is life for the McTaggarts, but they are not complaining.
In spite of all their difficulties, Brandon’s family remain positive, united and thankful for all they do have. Mrs McTaggart takes her cue from Brandon. “He’s such an inspiration when you are starting to feel sorry for yourself.
He smiles and he’s happy – and look what he has to deal with. You know he must have frustrations, but he can’t even voice it.”
Local charity ARK is organising a sandcastle competition this Sunday, October 9, on Seven Mile Beach to help raise funds for Brandon’s ongoing medical expenses.
For further details call 946 4360.
Coping with Brandon’s medical complications is bound to take its toll emotionally, but the family are resolutely postive and cheerful in that respect. It’s the financial toll they find harder to cope with.