With tears in her eyes, Kelly Hickman, a single mother and second-grade teacher in Oakland Park, vividly remembers the day last year when the doctors told her to kiss her 2-month-old daughter goodbye.
“I remember being in the middle of the halls. I was screaming. I was crying and calling for my child, wanting to be by her side,” Hickman said. “I thought she was gone.”
Za’Niyah “Nay Nay” Hickman was born with a congenital heart defect and an autoimmune disorder called DiGeorge Syndrome, a rare condition involving the underdevelopment or absence of the thymus and parathyroid glands, which leads to serious immune-system problems.
Nay Nay suffered three strokes at birth, and a week later underwent open-heart surgery.
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The baby survived, and Hickman took her daughter home to recover.
Less than two months later, Nay Nay suffered a relapse. She was taken back to the hospital, where the doctors told Hickman that her daughter was unlikely to survive.
But she did, and Hickman was able to take her daughter home.
“It was nerve-racking to bring her home,” Hickman said. “There were many times where I stood by her and watched her sleep to make sure she didn’t stop breathing.”
Hickman, 29, took a year off from Oakland Park Elementary School, where she has taught for five years. She returned to work in April because she had to cover big medical bills, along with car payments and the mortgage on her Fort Lauderdale home.
Day care was not an option for Nay Nay, now 13 months old. She is enrolled at the Tender Care Center, a special care center in Fort Lauderdale.
Hickman is behind on her car payments and utility bills. She struggles to come up with gas money, and fears she will lose her car. She is seeking gas cards and help with her monthly expenses.
“I’m not paying bills and I’m not able to do a lot of things, but I don’t need the luxuries in life,” Hickman said. “I have her.”
The future holds more open-heart surgeries for Nay Nay. The large hole in her heart was patched, but the patch will have to be replaced as she grows.
She recently has battled severe infections, has lost part of her hearing, and her left arm and leg are weak. She wears clothing designed a 3-month-old.
It has been a painful process, yet Hickman tries to remain positive.
“I will be trying to provide a normal life for her, and when open-heart surgeries come up, just to try to encourage her, love her and treat her like a normal child,” Hickman said. “She has endured a lot.”
As Hickman looks at her baby’s scar, which runs down the middle of her chest, she is reminded that Nay Nay is a fighter.
“I am so in love with her, I just cannot imagine life without her, even with all the bad things that we have been through,” Hickman said. “I want to give her the world even if it’s just all the love I can give her.”