Home' Trinidad and Tobago Guardian : June 22nd 2017 Contents life B7
Thursday, June 22, 2017 guardian.co.tt
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 gy-
naecologist. 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 go-
ing 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,"
"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 wor-
ried. 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 devastat-
ing discovery. Baby Peyton had congenital
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 de-
veloping 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
Parents' struggle highlights shortfall in T&T health care
through her mouth and has to be fed through a feed-
ing 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 profes-
sion in T&T. Currently there are around 20 OTs in
the country, which is far beneath that required for
Medical care from doctors or hospitals is only one
aspect of coping with an illness or disability. Occupa-
tional therapists help patients learn or relearn ways to
do regular activities that may have become difficult
for them, like getting dressed, brushing teeth, comb-
ing hair or, as in Peyton's case, eating and reaching
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 be-
cause of her fragile state.
"The physical therapist might work on getting you
stronger and work on repetitions," said OT Sara Ste-
phens, 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
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 Associa-
tion was formed in 2004, when there were only four
OTs in the country. Through their efforts, an occupa-
tional 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 grad-
uated 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."
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