They call themselves Not From Normal, and honestly when you listen to the type of music that this local group makes, you will tend to agree.
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Parents’ struggle highlights shortfall in T&T health care
When Nirala Alfonso, the mother of an adult daughter, was surprised with her second pregnancy, she did everything to have a healthy and bright baby. She went for regular check-ups at the gynaecologist. She took walks. She played Beethoven for the foetus. She watched what she ate.
“When you’re going to have a baby, you have the highest expectations for your child,” said Alfonso. “The expectation is you’re going to have the most amazing human being that would exist in this world.”
But, as with life in general, things can happen during a pregnancy that you don’t foresee. When Alfonso’s new baby daughter Peyton was three months old, she noticed the child wasn’t developing as she should.
“Not seeing my daughter being able to hold her head up—that was the first sign,” said Alfonso.
“As time started passing, my friends would say, ‘She’s sleeping, and she’s not getting up with any noise.’ I started wondering why she wasn’t startled at all,” said Alfonso. “I started seeing she’s not following with her eyes properly. I became more and more worried. I went to her paediatrician and I said, ‘I think something is wrong and I don’t know what it was.’ She was flopping. She was like a rag doll.”
When doctors in T&T couldn’t diagnose the problem, Alfonso and husband Gerard took the baby to John Hopkins Hospital in Baltimore, where they made the devastating discovery. Baby Peyton had congenital CMV infection.
People contract CMV through an exchange of bodily fluids—blood, tears, saliva, urine. And pregnant mothers pass it on to their unborn babies. While CMV doesn’t usually have serious effects on adults and children, it can cause a range of health problems in developing foetuses, most commonly deafness.
In addition to being hearing impaired, Peyton, almost three years old, is visually impaired and has undeveloped motor skills: she can’t yet speak or walk. Because of a sensory disorder, she refuses to take food through her mouth and has to be fed through a feeding tube. She’s underweight, and a problem with her esophagus causes her to throw up frequently.
Alfonso stayed in the US for almost year getting treatment for Peyton, which included physical therapy and occupational therapy. The occupational therapy helps Peyton accept food in her mouth, which makes it vital to her chances of survival. When inevitably mother and daughter had to return to T&T, accessing quality occupational therapy was a major concern—and with good reason.
Occupational therapy is still a very young profession in T&T. Currently there are around 20 OTs in the country, which is far beneath that required for the demand.
Medical care from doctors or hospitals is only one aspect of coping with an illness or disability. Occupational therapists help patients learn or relearn ways to do regular activities that may have become difficult for them, like getting dressed, brushing teeth, combing hair or, as in Peyton’s case, eating and reaching for toys.
Only five occupational therapists are available in the public health care system in T&T. And only a few make home visits, which is what Peyton required because of her fragile state.
“The physical therapist might work on getting you stronger and work on repetitions,” said OT Sara Stephens, explaining her profession. “The occupational therapist is going to tell you: If you can’t get your hip past 90 degrees, how do you get dressed?”
Stephens, a paediatric specialist, has been working with Peyton for six months now, after Alfonso found her company online. Stephens runs Therapy Works with three other OTs, two speech therapists and an art therapist.
The results have been amazing, said Alfonso, her eyes wide with gratitude and excitement.
“The strides that Peyton has made are phenomenal, and due to occupational therapy,” said Alfonso. The child is sitting up, crawling and accepting food in her mouth (though she isn’t eating yet). Stephens expects her to eventually walk.
“Every week I see something new. I can’t tell you how encouraging it is as parents to see this kind of progress,” said Alfonso.
The small group of occupational therapists in T&T united to help people learn about and access their services. The T&T Occupational Therapy Association was formed in 2004, when there were only four OTs in the country. Through their efforts, an occupational therapy masters programme was set up at the University of the Southern Caribbean last year. Nine students are currently enrolled and applications are now being accepted for a new cohort.
The association awards yearly bursaries to students in the field. Awardee Khamara-Lani Tarradath graduated from the University of St Augustine, Florida, in 2015 and is now a member of the association.
“Everybody has different goals,” Tarradath said about OT clients. “One person’s goal might be to take care of their garden. Somebody else might want to be able to do their own shopping. Or it might be that she wants to be able to sign her name or feed herself. Children with special needs grow up to be adults with special needs. So we try to address Life span needs.”