Ja’Dei Grant was born with abnormalities, which means that, up to December 2019, she has already had four surgeries – cleft lip surgery, two eye enucleation surgeries and cleft palate surgery. Those were just to begin the repairs to the abnormalities she was born with – bilateral microphthalmia (a condition in which both her eyeballs were abnormally small) and a cleft lip and palate (birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy). But she has thrived in the first two years of life, so much so, that her parents are looking forward to enrolling her in pre-school. They say they know once she’s around children her age, she will “bloom” like their other children did.
Ja’Dei, who turned two on July 1, has had her pre-school enrollment delayed, because she has not attained the milestones her mother wanted for her. She wanted Ja’Dei to be walking and talking first before placing her into pre-school.
“She’s doing a lot more standing, a lot more moving about, but she’s still not walking on her own quite yet,” said Dereka Grant. “But we (along with dad, Jarvis) are hopeful that she gets stronger and continues until she can walk. She’s also still not talking quite yet, but definitely doing a lot of head shaking and answering questions and grunting, so we’re making progress. I know once she gets around other kids her age she will thrive, but I wanted her to walk and talk first.”
COVID-19 interrupted the family’s plan for the toddler, as all of her therapies – occupational, speech and infant stimulation – had to be suspended as the country shut down to try to contain the spread of the new coronavirus.
The Bahamas identified its first case of COVID-19 on March 15.
Up to yesterday, the country had 104 confirmed cases, 11 deaths, 89 recovered cases, zero hospitalized cases, four active cases and 2,461 completed tests.
Worldwide, there were 11,516,782 confirmed cases and 535,453 deaths.
“If she had been able to continue her therapy, she would have been much further than she is now, because I only know so much,” said Grant. “If she starts crying, I’m going to ease up. The therapists know exactly what it is she should be doing and her benchmarks.”
Infant speech pathology is a form of therapy in which an infant learns how to feed properly and/or learns to develop better communication skills. Toddlers and children with speech problems can learn effective communication skills via a variety of therapy and learning options.
Occupational therapy intervention goals include improving motor skills, improving social skills and improving cognitive/perceptual skills.
Infant stimulation therapy includes activities that stimulate the senses of sight, sound, touch, taste and smell, and can improve curiosity, attention span, memory and nervous system development.
Grant is hoping her daughter is able to get back fully into her therapy regiment.
She’s had two WhatsApp video sessions with her infant stimulation therapist over the past two weeks, which entails Dereka talking to the therapist and Ja’Dei just doing her own thing, rather than what she should be doing.
“Infant stimulation therapy is a lot of movement, getting her to grasp things, try to answer questions, it’s kind of a combination of speech and occupational therapy. Speech is definitely: ‘What is this?’, ‘Do you want more?’, or ‘Say up’. Their exercises are geared towards her actually answering questions. Occupational therapy is teaching her how to clap, passing from one hand to the next, stand up, sit down – more physical things. And then the stimulation therapy is an amalgamation of the two.”
Grant says she does her best by her daughter, but is hoping her therapy sessions get up and running again soon,
so she can continue to make progress.
And then there was the fact that the pandemic coupled with lack of funds meant that Ja’Dei could not undergo a scheduled procedure to have her eyelids sewn shut, which was being done to eliminate the toddler removing the sclera shells that are placed in her eye sockets to protect her eyes from dirt and bugs flying in and possibly causing an infection. As her eyelids don’t close all the way, the shells serve to protect Ja’Dei’s eye socket space.
“We are postponed to December because of lack of funds and COVID, so I’m praying her surgeons do not get affected, because her ocularist was already up in age,” said Grant.
The Grants need approximately $10,500 for the toddler to be able to have the procedure done; the surgery itself is $8,500; the shells to put in the eye costs $2,000; and that does not include living expenses while in the United States and the fact that the parents now have to pay full fare for Ja’Dei, who is two years old.
During the height of the pandemic and stay-at-home orders, Grant said, there were times when Ja’Dei definitely wanted to be outside, which meant she could not console her daughter who just wanted to be outdoors. During those times, she said, they would go for walks in their neighborhood, which would soothe her.
“Other than that, she was quite fine. Now we take her outside to stretch her legs and just not be inside so much. Other than that, once she has her [music]. Oh my God! Music is her life right now! She wakes up and wants her music. It doesn’t matter what song it is – but once the music turns off, it’s a problem.”
As COVID-19 cases increased in The Bahamas, with 82 confirmed cases on New Providence, eight on Grand Bahama, 13 on Bimini and one on Cat Cay, Grant said she was afraid for her daughter many times, as she can’t wear a mask, due to the fact that her airway is small and shallow. Parents were also advised to not place masks on children under age two.
“I did not and do not want anything to affect her at all,” said Grant who said it was a concern. Compounding the problem, she says, is the fact that her daughter won’t wear a face mask if she has to.
“You can’t even put a headband on her – she’ll take it off. So I know she’ll do the same thing with the mask. And then she has that shallow air passage. I just want to make sure she’s getting adequate oxygen. Medically, I guess she doesn’t have to [wear a mask], because she has a viable medical reason not to.”
And with Ja’Dei’s visual impairment, she can’t even see other children wearing masks to know that it’s for her safety.
Grant said she was awed when they celebrated their daughter’s second birthday.
“I just said, oh wow, we have made it so far; she’s two, and she’s survived everything – all the challenges. I’m very happy we’ve made it so far, because it could have been a different story. She’s now two; it passed in, like, a blink. It seemed like she was just born.”
Because of her birth defects, Ja’Dei will need numerous surgeries throughout her lifetime.
The surgery to sew her eyelids shut was not one of her planned surgeries. Her doctors recommend the surgery to keep the sclera shells in place, as Ja’Dei puts her fingers into her eye sockets and removes the shells, which cost her parents $1,000 a pair.