Ja’Dei Grant is described by her mother, as a feisty, happy infant who is hitting all of her milestones at age five months, just as her three siblings did – her only difference, Ja’Dei has bilateral microphthalmia (a condition in which both her eyeballs are 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) – abnormalities that arose before birth.
With three healthy children prior to Ja’Dei’s birth, parents Jarvis and Dereka Grant, were taken off-guard when a routine scan showed their child would be born with a cleft lip and palate. The roof of the mouth is formed between the sixth and ninth weeks of pregnancy; a cleft palate happens if the tissue that makes up the roof of the mouth does not join together completely during pregnancy.
“When we found out about the cleft lip and palate, of course we were upset and devastated,” said Dereka. “I don’t know anybody personally who has had a cleft lip and palate. I had only seen it on TV, so I was like ‘oh my God!’ The world came to an end on that particular day. However, I’m the kind of person who only needs to cry one day. Me and my husband, we just cried one day, the next day we were planning a fundraiser.”
Knowing that her health insurance would not cover any pre-existing conditions prior to birth, the Grants held two fundraisers while she was still pregnant to cover the cost of the surgeries to repair their daughter’s cleft lip and palate, which they knew they had to pay for out-of-pocket.
When Ja’Dei was born the mother remembers the doctor saying to her that he didn’t want to alarm her, but her baby’s eyes were really swollen.
“As soon as she was born with the eyes situation, the cleft lip and palate situation kind of went out the window right away because that part could be fixed. But the eyes … at first they didn’t know what it was.”
Dereka recalled the devastation she felt after her friend told her that it looked like there was nothing inside Ja’Dei’s eyes.
On the fifth of her 20-day stay in the NICU, Ja’Dei was diagnosed with bilateral microphthalmia.
“Her eyeballs did not develop enough. When they further tested her, they diagnosed her as having a disorganized eye. In other cases of microphthalmia they actually have an eye, it’s just that the eye is small, but in her [Ja’Dei’s] case, her eyeball barely developed. She has a retina, she has an iris, she has a cornea, she even has the muscle, but because the eyeball was so small, it didn’t have anything to attach to, so they call it a disorganized eye. Ocular cysts grew as her body’s response to the empty space left when her eyes did not grow.”
The Grants are preparing to have Ja’Dei’s cysts removed and place ocular prosthetics in her eye sockets. She will also need to have surgery every three years to enlarge and repair her sockets as her face grows.
“At this time when they take out the ocular cyst she will not have any sight,” she said.
Dereka said medical professionals have told them that they believe Ja’Dei will be blind, but they are holding out hope with technology.
“We searched, and technology the way that it is now, we know that it’s not the end of the world, and there are other people who have been blind and were born with no eyes. There was a nurse that the other nurses were speaking highly of and about her son who had been born with no eyes at all, so that gave me hope right away,” she said.
As soon as Ja’Dei was released from hospital, the parents took her for second and third opinions and further testing and diagnosis.
“I did whatever was needed to be done so that I could ensure that I don’t do her a disservice as her parent.” The monies raised during her pregnancy that was to go towards Ja’Dei’s cleft lip and palate repair went to defray the five consultations she has already had to undergo in Chicago and Miami.
By the time she attains her first birthday in July 2019, Ja’Dei is expected will have had her first three surgeries, the first of two to begin repairs to her cleft palate is scheduled for February 2019 at Rush University Medical Center in Chicago, Illinois. Ja’Dei’s cleft is considered a wide cleft that impacts all the way to her nasal cavity on the right side of her face. The upcoming surgeries are to close the split in her lip and attempt to fill in the gap of the palate so that she can eat, breathe and speak normally.
Surgery to repair a cleft lip usually occurs in the first few months of life and is recommended within the first 12 months of life, and recommended within the first 19 months of life or earlier if possible. Many children need additional surgical procedures as they get older. Ja’Dei will be required to have a team of doctors until she is at least 14 years of age – a pediatric plastic surgeon, a pediatrician, a pediatric orthodontist, an ear nose and throat doctor and a pediatric speech therapist.
With a new baby, most parents know of the sleepless nights and the endless diaper changes. The Grants never expected that they would have to add facial taping and nasal elevation which they have to do on a weekly basis to their routine. The taping is a sterile strip for Ja’Dei’s cleft which is placed from cheek to cheek to help close the gap as she grows; the nasal elevator hooks from her forehead to her nose and helps to pull it up so that when it’s time for surgery. Or that they would have to take their child to infant stimulation therapy, which Dereka said has also been therapy for her because she’s learnt how to help Ja’Dei as a blind child.
“Whereas my other children could see things I was bringing to them I have to approach her differently in terms of not scaring her by just shoving a bottle in her face, but guiding her hands to it, letting her feel it and letting her smell it and then putting it in her mouth – things like that. Other than that, she’s your regular feisty child just like my other children,” she said.
Ja’Dei’s ocular cysts are expected to be taken out at the end of April early May, and the surgery for her palate on the inside of the mouth is expected to take place July/August.
After those initial surgeries, going forward, every three years, she is expected to have surgery as her face grows.
“Every time her face grows she will need a new implant. They will attach the muscles that she has control of, because she can blink and everything. When we were doing the ultrasound, you could see her moving this stuff around, so they’re going to attach the implant to the muscle so that she can move it around, so when you look at her she looks like a normal child, it’s just that she won’t have sight. She will need to have surgeries until she stops growing.”
Ja’Dei is also expected to have to undergo a hip bone graft at age nine or 10 to place inside her mouth, which her mom said will be a major surgery.
Starting from scratch again in the fundraising department, the Grants have been quoted a starting price of $68,000 for the initial three surgeries.
They have opened a crowdfunding page on FundRazr.com where they have raised $4,156 from 47 contributors in 159 days towards their $68,000 goal.
To further defray medical costs, the Grants, co-owners of Emanji Circus Arts, will host a gala medical fundraiser on Thursday, December 27 at the Dundas Centre on Shirley Street at 6:30 p.m. with all proceeds earmarked to go towards Ja’Dei’s corrective surgeries.
Anyone wanting to make donations directly to the hospital in Ja’Dei’s name can also do so, according to the mother. She said people do not have to make contributions directly to them if they are uneasy about doing so.
“I know there are people out there who make false requests, this is legitimate. She really needs it,” she said.
Dereka also encourages people to attend the gala to show their support.
“My husband and I are of this thinking that we’re giving you something in return for the funds. We try to do events to raise funds, so whenever we have an event, please support us, because the funds are going towards our baby girl.”
Persons wishing to assist can look to become an event sponsor at $1,000 to $2,500; advertise in their event booklet at $100 to $400; donate in-kind services; donation of items for a silent auction; or make a monetary donation to www.fundrazr.com/JGrant 2018.
The Grants can also be contacted at 242-424-4532 or 242-820-4534.