RICHMOND, VA (WWBT) - A Fredericksburg family is searching for answers to why their 8-month-old daughter continues to flatline in the hospital nearly every day.
Amirah Nicholson and her twin, Nevaeh, were born in March prematurely.
Shortly after their birth, Amirah started having health issues and was eventually transported to VCU Medical Center.
Since then, doctors have diagnosed her with a lung disease, but Amirah’s mom, Jennifer Wright, said there’s something else contributing to her health issues that doctors can’t figure out.
“Everything that’s been happening just stunned the doctors,” Wright said. “They just don’t know what to do.”
Wright said her daughter Amirah was diagnosed with Bronchopulmonary Dysplasia. That’s where the lung and airways are damaged during the neonatal period causing destruction of the tiny air sacs of the lung.
Out of the nearly 4-million infants born every year, roughly 10,000 get diagnosed; that’s less than one-percent.
“It’s hard,” said EJ Nicholson, Amirah’s father. “You go up there in her room and you just want to cry. There’s nothing you can do but just be there for her and pray.”
“She got better for a month and now we’re back down again,” Wright added.
Amirah has had a feeding tube for several months, but now she’s also on life support because of brain damage she suffered after nearly dying.
“She didn’t know who we were for two months after the big one,” Wright said.
The problem is, Amirah continues to flatline almost every day, for reasons the family and doctors can’t figure out.
“That is the hardest part being a parent, is when you can’t help your child,” Wright said. “That is the worst feeling in the world… The last time she coded was at 6:50 a.m. today.”
While many people see the situation unfold on medical shows – a patient flatlining and having to be resuscitated – it’s a common reality for Amirah’s family.
"I never thought I could handle something like that,” Wright said. “It's life changing."
“Each time I’m there and it happens, I cry,” Nicholson added. “When you love someone so much you hate to see them [hurt] especially a little baby like that.”
What makes the situation even more puzzling is Amirah’s twin, Nevaeh, is perfectly healthy.
"They've never seen it happen, especially in identical twins, where one has issues and the other one doesn't,” Wright said. “So this is part of their big question mark, why?"
And the connection they say Amirah has with her twin, is unbreakable.
“When they’re together it’s just mesmerizing,” Nicholson said. “To see them sit there, it’s like an unspoken bond. She loves her sister to
Amirah has been in the ICU since she was born, but her family said she’s come back from situations doctors never thought she’d be able to.
“She’s a warrior,” Nicholson said. “All of the stuff she’s been through a lot of people don’t experience that in their whole lifetime. Just to see her 1 pound 9 ounces when she was born, they didn’t give her a chance and she’s made it this far.”
While the family spends countless hours in the hospital with Amirah, they do have three other children to take care.
“It’s been really tough on the boys,” Wright said. “They take it pretty hard when they see her.”
“It’s extremely difficult,” Nicholson said. “At the end of the day I hate leaving and having to go to work because she’s all I think about. But at the end of the day bills have to be paid.”
However when the family does spend time with Amirah, they try to make the most of it as possible.
"We'll read, we'll put her in a little chair as close to the machines as possible and she'll have the little toys in front of her,” Wright said. "She'll smile at you and she shows you that she wants to keep going. That's what keeps me going for her."
The family has been staying at The Doorways, a hospitality house down the road from the hospital for families who have long-term patients.
Wright said she’s grateful for the organization’s help in allowing her to be as close to her daughter as possible.
Meanwhile the family is searching for anyone with medical knowledge or insight into what may be happening to Amirah to contact them.
The family has also put together a fundraising page to help deal with the medical costs not covered by insurance.