Ja’Dei Grant is the typical feisty 18-month old – when her siblings bother her and she doesn’t want them to, she lets them know; and when they’re not giving her attention when she wants it, she knows how to use her baby wiles to get it. And then there are the temper tantrums, which her mom Dereka Grant says are legendary.
“You can tell when she doesn’t want anyone fooling with her – and then she will be like ‘I miss ya’ll, come’. She loves her sister Ja’Dal and her brother Ja’daj,” said Grant. Her mother said the toddler definitely has her own personality that really comes through despite the fact she was born with a number of abnormalities, which to correct, meant she would have to undergo many surgeries over her lifetime, with multiple surgeries taking place in her first year of life on her eyes and to repair a cleft lip.
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 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).
While her parents, Dereka and Jarvis Grant, know Ja’Dei will need numerous surgeries throughout her lifetime, they have recently learnt that Ja’Dei needs another unplanned surgery, as doctors have recommended her eyelids be sewn shut for at least six months to a year. The cost for the surgery has been at $8,500.
This additional surgery is all Ja’Dei’s doing. Her mom says she’s not behaving and she is removing the sclera shells that have 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 don’t close all the way, the shells serve to protect Ja’Dei’s eye socket space.
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.
“She’s taking the shells out of her eyes, so they want to sew them [her eyes] shut so the shells can do their job,” said Grant.
When Ja’Dei takes them out when her parents are not looking, that’s more money the Grants have to shell out. They also have monthly visits to the United States for Ja’Dei’s sclera shell pressure procedures, which are expected to be in place before she gets her permanent shell placement.
“The risk is greater not having the lids shut,” said Grant. “So, we’ve been vigilant – when she takes them out, we save them.”
According to Grant, Ja’Dei is simply being unruly when she removes her shells.
“When we put them in and they’re in she laughs and plays and is good for about two to three days, but then she just takes them out.”
When sewn shut, the eyelids will remain that way for six months to a year, to give the shells the opportunity to do what they’re supposed to do. Grant is hoping her daughter’s lids are only sewn shut for six months and she can have the sockets that look like eyes placed in.
To facilitate this latest surgery, Grant has also extended a loan she already had, but says it’s not enough, as the family also has to cover living expenses for a week when they take Ja’Dei to the doctor.
Ja’Dei will not be able to get implants that look like eyes until she’s two-years-old. In the mean time, she’s going to need different shells every few months, followed by revision surgery every two to three years.
Grant said Ja’Dei is also doing well after palate surgery in October, and a checkup in November, but she’s now noticing a hole behind her daughter’s teeth and said it looks like Ja’Dei has a tooth growing inside her mouth, which will have to be removed and could remain an additional surgery.
Otherwise, she said Ja’Dei has graduated to feeding from a bottle and cup and no longer has to be fed with a syringe. She’s also on a high calorie diet to help her put on weight.
Grant said her daughter is also now trying to walk and is able to pull herself up to stand.
With her palate closed, Grant said Ja’Dei is making sounds, and that they are about to start her speech therapy.
“She has her own goals, I guess she’s saying I was behind, now I’m thinking of catching up,” said Grant.
From the day her daughter was born, Grant has spoken positivity over Ja’Dei. Despite Ja’Dei’s birth abnormalities, Grant has always wanted her to grow up knowing that she can do whatever she wants, and that she and her husband are willing to find a way to give Ja’Dei every opportunity.
Ja’Dei may still be too young to understand what her mom says to her but since birth, Grant said she has been telling her youngest child that she can do anything that she wants and to not allow her blindness to hold her back, and to not allow other people’s thoughts about her blindness to hold her back.
“I don’t want her to be held back because she’s blind.”
Her mother has researched all manner of devices Ja’Dei can make use of so that she can have every opportunity and every advantage possible, because she’s already disadvantaged.
“Whatever it is that she wants to do, I’m here to support her in it – once it’s something positive.”
Her eye surgeries last year at Bascom Palmer Institute involved removal of her eyeballs along with the cysts that grew in place of eyeballs, and temporary implants placed in the eye sockets. The surgery involved draining the cysts and putting in implants in both her eyes, in a surgery that was anticipated would take approximately an hour-and-a-half, the doctors faced complications with Ja’Dei’s 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, which resulted in a five-hour surgery on the first eye socket. The eye had to be removed completely and an implant put in. Surgery on her left eye was put off so as to not put the toddler under further stress, which meant a second eye surgery had to be scheduled within two weeks. The doctors wanted to avoid a situation where the cyst ruptured in her left eye as well. A second eye surgery meant the Grants having to find an additional $12,000 after having paid $34,000 for the first surgery.
For Ja’Dei’s second eye surgery, the surgeon and anesthesiologist waived their fees, which meant the Grants only had to pay for the theater and medicine and other incidentals.
“So, they weren’t true cysts, but were cyst-like in terms of their shape and size, but were actually blood vessels. They removed those and had to remove the eyeballs themselves because they were basically cutting off the blood supply to the eyeballs and they didn’t want the eyeballs to rot inside her skull,” said Grant.
The two eye surgeries, which came after surgery to repair her cleft lip, happened in March.
Ja’Dei will have doctors in her life for the rest of her life.
“Last year went well as far as surgeries, but I’m not looking forward to the other surgeries, because she has been through so much – but it’s necessary,” said Grant.
Medically, the expenses are ongoing – every week someone sends a bill for something.
To pay for Ja’Dei’s medical expenses, the Grants have crowdfunded on FundRazr.com, where, to date, they have raised $11,100 of their $40,000 goal from 100 contributors over 80 weeks. The co-owners of Emanji Circus Arts have also hosted a number of fundraisers to assist in defraying the cost of their daughter’s medical expenses.
Grant has also said Ja’Dei has been incredibly spoiled and loves music.
“She is absolutely spoiled, which I know I’m going to regret,” Grant told The Nassau Guardian. “She feels our faces, so she knows us by voice [and] by touch. She knows when we enter the room. She’s a very intelligent child. If you say ‘Ja’Dei I’m coming to dress you’, she would stretch out her arms. If you say ‘Ja’Dei I’m coming to wipe your face’, she would turn towards you. And she loves music. When the music stops, there is a problem. Or, if she’s in her push and is lazy on any given day and she doesn’t want to move herself, it’s a problem, because no one’s coming to push her.”
Looking back at her daughter’s short life to date, Grant said she’s thankful to everyone who has been supportive of her family.
“I’m thankful to everyone who helped and have given at least a kind word – those who couldn’t help called, or just came out when we had a fundraiser, and it’s been tremendous support, but we still need help going forward.”
But she also admits that she’s tired and overwhelmed and that she is proud of her daughter who she says is a trooper, because after each surgery, she says Ja’Dei is right back to herself. But she also says words can’t describe how she feels because she’s still going through it.