Pandemic fallout

Dereka Grant’s one wish for her daughter, Ja’Dei Grant is that she does not miss out on opportunities during her life, because she could not give her something, or people look at her and hold it against her. But in this new year, she wants to erase the damage that was done to her child who missed out on a year of therapy due to the COVID-19 pandemic.

Without access to therapy, Grant said she and her husband Jarvis witnessed her two-and-a-half-year-old toddler lose all the confidence she had built up.

“I wish it [the pandemic] did not happen because I knew she would have been so much further than where she is now. She has backtracked a lot. When we first started in 2020, she was attempting to make steps to walk and now we’re starting all over again.”

Grant said her daughter would literally cry when she tried to work with her.

“It was me trying to do what the therapist does, and I don’t know how to do it. She would cry, so I would stop. They know how to calm her down and keep going.”

Grant said she even resorted to trying therapy online, but it ended up being just her talking and she said it did not make sense to her.

“It’s kind of devastating because I know she could have been much further. She has lost a year.”

The only positive change she said is her daughter has gotten taller.

“We have pretty much been in limbo, so to speak, and I’ve been trying to do what I can do on my own.”

Ja’Dei 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).

Up to December 2019, Ja’Dei has already had four surgeries – cleft lip surgery, two eye enucleation surgeries and cleft palate surgery, all of which were successful with minimal side effects, according to her mother. Those surgeries were just to begin the repairs to the abnormalities she was born with.

Her eye surgeries in 2019 involved removal of her eyeballs along with cysts that grew in place of her eyeballs and temporary implants placed in the eye sockets. The surgery involved draining the cysts and putting in implants in both her eyes, but had an unexpected complication with the right eye. The cyst had ruptured and debris which they later learnt were blood vessels that were supposed to be growing on the inside of her eye, growing on the outside and appearing to be a cyst, had started to fuse to the bone. The eye had to be removed completely and an implant put in. Surgery on the left eye was put off, so as to not put the toddler under further stress, which meant a second surgery had to be rescheduled, which meant the Grants had to find thousands of additional dollars.

The two eye surgeries, which came after surgery to repair Ja’Dei’s cleft lip, took place in March 2019.

Ja’Dei’s parents know their daughter will need numerous surgeries throughout her lifetime. Early last year, they realized Ja’Dei would need another unplanned surgery, as her doctors recommended her eyelids be sewn shut for at least six months to a year, to stop the toddler from removing the sclera shells that had been placed in her eye sockets to protect her eyes from dirt and bugs like mosquitos flying in and possibly causing an infection. As her eyelids do not close all the way, the shells serve to protect Ja’Dei’s eye socket space.

The cost for the surgery was pegged at $8,500. The cost for each pair of sclera shells cost the Grants $1,000.

The Grants also had monthly visits to the United States for sclera shell pressure procedures for Ja’Dei, until she was able to get permanent shell replacement. The toddler was also supposed to have gotten her implants that look like eyes when she turned two.

Ja’Dei had palate surgery in October 2019, and a checkup in November, which meant she was able to graduate from being fed with a syringe to feeding from a bottle and cup. And in early 2020, her mom said she was pulling herself up and trying to walk.

“She really regressed during 2020 with the lack of therapy, and it’s back to 2019 with her confidence. She’s not confident anymore. Now, she’s no longer afraid to stand up or take steps holding her hand. It’s like 2020 didn’t happen, and it’s back to 2019 with her confidence. She really regressed during 2020 with the lack of therapy. Around October, she even refused to eat food and only wanted milk for four months straight. With her cleft palate, she’s already underweight.”

Grant said she does not know if their daughter fed off the family’s energy, which she said was tense in a household of seven in which she was the lone breadwinner, and not even taking home her full salary as a portion was going to pay for medical loans for Ja’Dei. Her husband, who works in the entertainment sector, saw his industry completely shut down.

“Just trying to put food on the table, that took precedence over everything. I did not have it to even get her to doctors’ appointments, even when I wanted to,” said Grant.

She said their situation is dire as Ja’Dei needs to see her doctors for an assessment as any shells she had do not fit anymore. And that now that she has matured a year since her last visit, if she would leave them alone, and not have to have her lids sewn shut.

But as in the past, money, Grant said, is still the biggest issue.

No matter what, she assured she will do her best by her daughter. From the day Ja’Dei was born, she said she has spoken positivity over her. Despite her abnormalities, Grant said she has always wanted Ja’Dei to grow up knowing that she can do whatever she wants and to know that her parents would do everything to find a way to give her every opportunity. With that in mind, Grant pushed for Ja’Dei to be enrolled in preschool.

“We started preschool now because she’s actually interested in things. I see that the intelligence is there, and I said I don’t want to lose her just being home laying down. She is a very resilient, happy child.”

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