Correcting Ja’Dei’s abnormalities
The “journey” to give baby Ja’Dei Grant a better life has begun with Ja’Dei undergoing cleft lip and palate (birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy) surgery on March 9, and preparing for bilateral microphthalmia (a condition in which both her eyeballs are abnormally small) surgery in May.
Ja’Dei, who was nine months old on Sunday, was born without the bottom of her right nostril; the abnormal opening which was closed during her March surgery and the muscles moved around so she would have control over her lip as it heals.
It was just the first of many corrective surgeries Ja’Dei is expected to have over the coming years. The March 9 surgery was postponed from the original scheduled February procedure as her parents Jarvis and Dereka Grant were not able to afford for the cost of the surgery in the United States. With the return of her local doctor, Ja’Dei’s surgery to repair her wide cleft which impacted all the way to her nasal cavity on the right side of her face, was performed at home at 80 percent less than if she had to be taken abroad. Closing the split in her lip and attempting to fill in the gap of the palate would allow her the ability to 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 year of a child’s life.
“We didn’t have the funds, but God is an awesome God. My original doctor was able to do it at PMH and the cost was minimal,” said Ja’Dei’s mom. “I had to pay for the echocardiogram, so that had to be done privately at about $1,500 – so with basic things, I would say about $2,000 altogether which was awesome.”
Ja’Dei is in the process of recovering from that first surgery and her parents are working to get her back up to her usual feeds after she lost weight while in the hospital.
“When she first came out she wasn’t eating as much as she used to, so we’re literally today back up to the six … seven ounces she was at, and [Sunday] we started to introduce baby foods like carrots and she did well with that, so we’re going to be continuing to get her back to where she was and then to continue to make sure she stays healthy and strong for the next surgery.”
Grant said they were happy to see their daughter finally starting to move forward with her surgeries which would give the infant a better life.
“I’m happy that they’re starting because we can start to move forward in terms of what it is she needs, and the expectations. You build and build, and it’s like finally something’s happening..”
She said when they initially had to postpone the February surgery due to being short approximately $10,000 she had been disheartened.
“When I had to postpone the February one, my heart beat plenty because I really did not have the money for it and couldn’t afford it. But like I said, God is awesome, and my original doctor came back and that just panned out. So, all of the money that we saved for the first surgery we then put towards the second surgery which costs more than the first which is why we’re still short. But we’re just happy and elated that things are finally happening.”
Ja’Dei’s second surgery to address her bilateral microphthalmia is scheduled for May 6 at Bascom Palmer Eye Institute at which time Grant said they’re supposed to have the cysts removed from Ja’Dei’s eyes and attach the prosthesis to her eye muscle so she will be able to move her prosthetics like a regular person.
The balance of the monies that were earmarked for the cleft lip surgery the parents have redirected towards Ja’Dei’s bilateral microphthalmia surgery which is expected will run them approximately $34,000. It’s a surgery they say cannot be done locally.
In the surgery, Ja’Dei’s cysts will be removed and replaced with ocular prosthetics in her eye sockets. She will need to have surgery every few years to enlarge and repair her sockets as her face grows.
Ja’Dei’s eyeballs barely developed. She has a retina, an iris, and a cornea. She even has the muscle, but because the eyeball was so small it didn’t have anything to attach to; ocular cysts grew as her body’s response to the empty space left when her eyes did not grow.
With her cleft lip palate surgery having gone well, Grant said they’re hoping Ja’Dei’s second surgery goes just as well even though they have to have it done in the United States.
“It’s different when you’re home, so we’re kind of anxious about it because we won’t be home for it, but we know she will be in great care, because her doctor is one of the experts in the entire country for microphthalmia, so we’re just anxious for it to happen and to see what she will look like and what it is that we will have to do then from there. Hopefully it will be a one-shot surgery and she won’t have to do a follow-up surgery right after.”
The Grants are approximately $7,000 short of the approximate $34,000 total needed for the Ja’Dei’s bilateral microphthalmia surgery – even after hosting a soup and souse-out fundraiser on Saturday at which she said they raised about $2,500.
Ja’Dei’s surgery second surgery is scheduled for Monday, May 6, but the bill has to be paid in full to the hospital by April 24.
“They do not take a payment plan,” said Grant.
The Grants haven’t purchased their airline tickets to take their daughter to the U.S. as yet because they’re trying to raise the money. But they’re hoping to depart New Providence on May 2, for their daughter’s consultation with the doctor before her surgery.
After Saturday’s fundraiser, the Grants don’t have any other fundraisers scheduled prior to the surgery date, and are relying on the generosity of corporate Bahamas and private citizens to assist their daughter.
“We’re just reaching out. There were a couple of places that promised, but we haven’t received anything yet, so we’re just keeping our fingers crossed that they do come through in time,” she said.
The Grants had three healthy children prior to Ja’Dei’s. They 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.
Grant recalled feeling devastated at the diagnosis and that the world had come to an end on that particular day. But she said she’s the kind of person who only needs to cry one day, which she said she and her husband did, and the next day they were planning a fundraiser, knowing that her health insurance would not cover any pre-existing conditions prior to her baby’s birth.
The Grants’ co-owners of Emanji Circus Arts held two fundraisers while she was still pregnant to cover the cost of the surgeries to repair their daughter’s cleft clip and palate, which they knew they would have 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 that her baby’s eyes were swollen. She said at first that they didn’t know what it was, and the devastation she felt after her friend told her that it looked like there was nothing inside Ja’Dei’s eyes. On the fifth day of Ja’Dei’s 20-day stay in the NICU she was diagnosed with bilateral microphthalmia.
“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,” she recalled saying to herself.
But Grant said she knew she would do whatever was needed to ensure that she doesn’t do her daughter a disservice.
With an infant, most parents are all too familiar with sleepless nights and endless diaper changes, but the Grants never expected that they would have also had to add facial taping (a sterile strip for Ja’Dei’s cleft which is placed from cheek to cheek to help close the gap as she grew) and nasal elevation (hooks from her forehead to her nose and helped to pull it up so that when it’s time for surgery), to their routine, which they had to do with Ja’Dei; as well as have to take her to infant stimulation therapy to learn how to help her baby as a blind child.
Whereas her other children could see things Grant brought to them, she had to approach Ja’Dei differently in terms of not scaring her by just shoving a bottle in her face, but doing things like guiding her hands to it, letting her feel it, letting her smell it, and then putting it into her mouth.
Besides the abnormalities with which she was born, Grant said Ja’Dei was a regular feisty child, just like her other children.
After these initial surgeries, going forward, every three years, Grant said Ja’Dei is expected to have surgery for a new implant until she stops growing. The prosthetics they will attach to her muscles will enable her to move around so she will look like a normal child. Her mom said it’s just that she won’t have sight. Ja’Dei is also expected to have to undergo a hip bone graft at age nine or 10 to place inside her mouth.
The Grants also have a crowdfunding page on FundRazr.com on which they have raised $7,559 of their $40,000 goal over 38 weeks. The last donation on the site was on February 6. If anyone wants to donate to assist the Grants in Ja’Dei’s corrective surgeries, but feels uneasy making contributions to the parents, they can make donations directly to the hospital in Ja’Dei’s name.
“I know there are people out there who make false requests, this is legitimate,” Grant told The Nassau Guardian earlier. “She really needs it,” she said.
The Grants can also be contacted at 242-424-4532 or 242-820-4534.