ONE LOOK AT two-year-old Takyla Lynch, and your heart will instantly melt.
Despite being equipped with a tracheostomy tube in her neck, a gastrostomy tube in her side for feeding, and being fully dependent on a ventilator, she waves and gives the sweetest smile to anyone approaching her bedside.
Born on July 20, 2015, Takyla has been a patient of the Queen Elizabeth Hospital for the past nine months, and has celebrated her last two birthdays there, having been diagnosed with spinal muscular atrophy type 2 (SMA), a genetic disease that causes muscle weakness and wasting.
Takyla’s mother, Patricia Hunte, recounted that her last child, and only daughter, was not reaching her milestones of development; something that left her concerned.
“At eight months, she wasn’t raising her head or anything like that. We took her to many doctors who said ‘she’s just a lazy baby’ and ‘babies does develop different’. Eventually, she saw Dr Deborah Babb at the Sir Winston Scott Polyclinic who said Takyla was “floppy”. She referred her to Jennifer Campbell at Delaware Centre, who agreed and gave the condition a formal name of hypertonia.
“She explained to us it was not a diagnosis, but more a symptom. She wanted to do tests to find out what was causing it,” Patricia explained from her daughter’s bedside.
A mere month later, things took a turn for the worse.
In an interview on Thursday, Patricia shared the details. “On June 30 last year Takyla developed pneumonia, which was strange because she did not have a cold. We went to Dr Babb’s private office and were rushed to the hospital. She came up to PICU (Paediatric Intensive Care Unit) with a collapsed lung and spent four weeks at the hospital. While she was here, the electroencephalogram (EEG) and electromyogram (EMG) that Dr Campbell wanted were done. The results showed something, but nothing to make a big thing out of.
“We went home for six weeks and the same thing happened again. We rushed her to the hospital, and she was [again] treated for a collapsed lung. She spent another four weeks, went home and came back with the same problem.”
November 4 was the last day Takyla was home. Since then, she has been hospitalised.
“Takyla failed a swallow test. The SMA makes her muscles so weak that it does not close her airways when she is swallowing. Instead of her feed going into her tummy it goes into her airways, which gives her an infection causing the pneumonia.
“She had to get an operation for a gastrostomy tube. Two days after the operation everything was fine, then Takyla went into respiratory distress. She got a really bad cold, which we found out was as a result of her aspirating on her feed,” said the mother of two boys, aged ten and 12.
In January, Takyla was diagnosed with SMA Type II, but despite the stressful situation, both Patricia and Takyla’s father, Anthony Lynch, have remained upbeat and can always be found with a smile on their faces.
Both parents have continued to keep a constant vigil at their daughter’s bedside, rotating as necessary.
“My two sons visit when they can. They have been so understanding even at their age. When they are at school, I have to leave here. Me and daddy, we share the hospital routine,” she said.
Patricia Hunte and Anthony Lynch make this trek along the hospital’s corridors every day, to see their daughter Takyla.(Picture by Xtra Vision Photography)
“I resigned from work last September, and once he has to work, I will sleep over. I would leave in the evenings about five and come back at ten. Daddy will come the next evening about five, and that is my life now.
“There was a point where I got sick when this first happened. I wasn’t eating, I wasn’t sleeping or taking care of myself. It came to the point where if I had to see Takyla, I had to wear a mask and a gown. I told myself I needed to get better for her and not be sick again,” Patricia said.
Anthony agreed that the situation was a very stressful one, but they had figured out how to deal with it.
“If I break down then mummy will break down, and I can’t have that happening. I have another son, and I hardly get time to spend with him because of Takyla being in hospital,” he said.
Takyla is the first known case of SMA in Barbados, and while doctors are trying to send her overseas for treatment, that has been difficult.
“There is a treatment that will make her a little better and prolong her life. I was told children born with this don’t live past a year, but the Lord has a plan for her. We have no medical insurance, and her condition is not listed as critical, so it has been difficult getting a hospital overseas to take her case,” said Anthony.
However, they are hopeful that their baby girl would soon be well enough to go home.
“She is showing signs of improvement. She was moved from the ICU on Monday to the ward down here, and she’s doing better in my opinion. In the meantime, I am collecting the necessary things to ensure she is comfortable when it is time for her to come home. I have already insured the house, and I have gotten an oxygen tank. Now I need to get the gauges and a portable ventilator and some other things to be prepared,” her father said. (RA)
