Baby Ari, born early but tough
Preemie spent first 298 days in Yale New Haven
NORTH HAVEN — Ari Williams arrived early, and she has gone through more in her short life than any baby should have to.
But the little girl with the long eyelashes and tiny cleft in her chin is fortunate in many ways. She has two parents who have poured their love and caring into helping her through the medical gauntlet she has been put through. She had doctors, nurses and other caregivers who made sure she would have the best chance possible.
And she won’t remember any of it.
Ari weighed 1 pound, 10 ounces, and was just 121⁄4 inches long when she was born Sept. 9, 14 weeks before her due date. But her saga began earlier, when her mother, who did not realize she was pregnant until she was three months along, found protein in her urine, was diagnosed with preeclampsia and an infection that had spread from her arm throughout her body.
“They couldn’t keep her in there with bugs in my blood,” said Taryn Bonner-Williams. She was admitted to Yale New Haven Hospital for more than a week before Ari was delivered by cesarean section.
“They basically said it would be easier to be out than to be in,” said her father, Andre Williams.
But Ari’s life didn’t start out easy for the Williams family.
“CPR was started because she wasn’t breathing,” Williams said. “The doctors basically said she wasn’t going to make it through the night” and asked Ari’s parents whether they wanted them to try to save her. Of course they did. But they began to call in family members, fearing the worst.
Then doctors discovered Ari had a lacerated liver and bleeding on the brain. Six hours later, “they came downstairs and asked us for our consent to do the surgery,” Bonner-Williams said. What caused the injury hasn’t been determined. “It’s a huge mystery,” Williams said. “We still don’t know. They don’t know. Nobody knows.”
“It’s been this domino effect of one thing after another to try to keep her alive and thriving,” her mother said.
“After the lacerated liver, she had issues with her kidneys because she wasn’t urinating,” Williams said. There was a hole between the major vein and artery in her heart, which usually closes before birth, but which remained open. Ari had to be intubated for six months because of chronic lung disease.
And on top of everything, Lasix she was given to reduce the fluids in her body made her bones brittle. She had fractures in both arms, both legs, a collar bone and in her back. “She had so many fractures at that point, I think they stopped telling us,” BonnerWilliams said.
“It literally went from her moving around … to no movement whatsoever,” Williams said.
But the bad news wouldn’t stop. She developed meningitis in February. “That was another time when it was uncertain she would pull through,” Bonner-Williams said. “She would have seizures every couple minutes for at least three to four days. She swelled up like a balloon.”
“You feel hopeless. There’s nothing you can do,” her father said. But they didn’t give up.
Then they discovered Ari wasn’t eating. As her liver healed, her intestines became tangled up like Christmas tree lights in a box, Williams said. Repairing the intestines is a surgery for a future time. Now, they aren’t connected. Ari is fed EleCare formula with a feeding tube into her stomach and has an ostomy bag.
“The surgeons are saying it’s super-complex so the more healing she can do the better chance that she has to recover,” BonnerWilliams said. “Literally every system in her body has been compromised at one point.”
They’ll have to wait a couple of years before they can tell whether the brain bleeds Ari suffered affected her cognitive function, but right now she’s a normally active, talkative, curious baby.
In March, with Ari still in the neonatal intensive-care unit, COVID-19 hit, making coping with Ari’s health all the more difficult. Hospital visits were severely restricted, but the NICU team “advocated strongly” that babies need at least one parent with them, Bonner-Williams said.
One parent had to be designated the “primary parent,” who could visit five times a week. The “secondary parent” could come only twice a week. And there was only one visit allowed per day — no leaving for lunch and coming back. But then one of BonnerWilliams’ relatives came down with COVID and the couple went into quarantine for 14 days. A nurse helped by connecting them with Ari via video chat.
Bonner-Williams father, Elton Bonner, died of COVID and her uncle and his grandmother both came down with the disease. Bonner-Williams’ brother is a correctional officer and, since the prison system has had numerous cases of COVID, he keeps his distance.
“She spent 298 days altogether in the NICU,” Williams said. “She ended up coming home on July 2.” Meanwhile, her parents went to “NICU University,” as her mother put it, learning CPR, how to insert her feeding tube and all the other things Ari needs.
Ari’s parents credited the team in Yale New Haven’s NICU with saving their daughter’s life, naming especially nurses Jona Sager and Donna Roberts, Dr. Daniel Solomon, who performed her surgery at birth, and Dr. Matthew Bizzarro, a neonatologist.
“It’s kind of what we do there,” Sager said. “I’m honored to be speaking for our team, but it’s important to know that it is a team, or it wouldn’t work.” But she said, “the most important part of the team is her parents” who helped bring about “the incredible outcome we did have.”
Sager, who has worked in neonatal intensive care for 32 years, said the NICU is a world of its own.
“The language is different, the conditions are different, the disease process is very different, so that parents have to be educated from the very beginning,” she said.
Ari’s parents were “very involved in the decision making … learning everything that they could,” she said. “For a baby that’s as critical as Ari was, there’s nothing more important than the parent part of the team.”
The COVID crisis created more difficulties and “made us sad that the babies couldn’t see us smile, especially as they got older,” Sager
said. But she was grateful that at least one parent could visit. Some hospitals allow no visitors to the NICU, she said. “I can’t imagine what that would be like.”
She said even after Ari went home staff on the unit would ask, “‘Did you hear from your family today?’ We truly get involved on a level that I can’t imagine any other part of medicine [is able to]. It’s not a job for us.”
Coming home was a great boost for the family. Banners outside the house proudly celebrate her first homecoming. Neighbors have been stopping by, bringing food, diapers and other items. “She needed that two-onone care with her parents,” Williams said. “She’s doing better. She’s thriving at home.”
According to her mother, “She still has some medical issues but they’re not acute right now,” so Ari can take some time to heal and develop and feel those allimportant hugs and see Mom’s and Dad’s smiles.
“This little girl is night and day from what she was even in the hospital,” she said. “She’s stronger, moving her head. She supports her head completely by herself now.”
Ari’s parents have a lot to do. They have to teach her how to eat and how to swallow. Her head is flattened in the back from lying on her back for so long, so she will be fitted with a helmet to reshape her skull. Bonner-Williams coordinates the delivery of supplies and medical appointments.
“I can’t count how many doctors and medical providers she has,” she said.
That’s all on top of their jobs. Bonner-Williams is the labor relations manager for the New Haven Public Schools and Williams is a conductor for Amtrak.
“We’re very happy that she’s home, but this journey is very hard,” Bonner-Williams said. “We became full-time nurses, pharmacists, janitors, all in the blink of any eye.”