Cherish Nero sits at a cafeteria table inside All Children’s Hospital, smiling at 7-year-old son Noah as he immerses himself in a Disney Junior video lighting up his iPad. She has been talking about the long, difficult road her little boy has traveled since the day he was born – a path that has been filled with just as many challenging turns for Cherish and husband Bill.
But whenever the young couple from Hudson, Florida feels the weight of their worries, they simply look at the second of their three children – Noah – and everything seems okay.
They know that the world-class care he receives at All Children’s Hospital Johns Hopkins Medicine in St. Petersburg for an array of challenges – including heart failure, cerebral palsy caused by a post-surgical stroke, autism and brittle bones – will keep him on course. In turn, Noah will keep his family going.
“He’s a wonderful boy, amazingly strong,” Cherish says. “We call it Noah Strength. If we have to get through something that’s hard, it’s time to pull up our Noah Strength. Because if he can do it, we can do it. With everything he’s been through, who are we to complain about something?”
Cherish, who projects a warm, upbeat demeanor, punctuated by frequent laughs, has been drawing extra strength from her son recently, preparing to travel with him to Washington, D.C., June 15-16 for Family Advocacy Day. She plans to tell lawmakers what hospitals like All Children’s mean for kids like Noah – and the desperate need for Medicaid funding to make vital, often life-and-death care possible.
Cherish had to leave her teaching job after Noah was born to devote herself fully to his care, leaving only Noah’s dad Bill, also a teacher, insured through work. Noah’s complex care is covered only by Medicaid.
“We rely on Medicaid, and I want lawmakers to see the face of a child whose life depends on the decisions they make,” Cherish says.
“Noah has gone through a lot and is lucky to have such a wonderful family,” adds All Children’s pediatric cardiologist Alfred Asante-Korang, M.D. “He’s done remarkably well, and his mom’s dedication has made a huge difference. He has some hearing and speech impairment, but he understands, and he’s coming along very, very well.”
The day after Noah was born, he began spitting up blood and had trouble breathing. An echocardiogram showed hypoplastic left heart syndrome, a complex birth defect in which the left side of the heart is critically underdeveloped.
The next thing they knew, Noah was aboard an All Children’s Hospital Critical Care Transport ambulance for an hour-long drive to St. Petersburg.
His first open heart surgery came at 3 weeks of age, a second one at six months and a third when he was 2. “He was 18 months old when his time at home finally exceeded his time in the hospital.” Cherish remembers. “It was such a big moment that we gave Noah a party.”
But more challenges lay ahead. The surgeries couldn’t save his heart due its particular anatomical issues. He was 3 when doctors recommended a heart transplant, but Dr. Asante-Korang (or “Dr. A-K”) was concerned that Noah’s developmental delays might prevent him from being considered a good candidate for transplant.
“Dr. A-K became our cheerleader as well as our doctor, urging us to get Noah caught up developmentally,” Cherish recalls. “I taught him sign language and we worked non-stop on standing and walking. He took his first steps when he was 4 and became fluent in sign language.”
Noah was approved for transplant and received his new heart at age 5, with pediatric surgeon James Quintessenza, M.D., performing the 16-hour operation. With a new heart, Noah quickly made developmental strides.
“He started talking, and everything was coming together,” says his mother.
Then Noah developed post-transplant lymphoproliferative disease (PTLD), a cancer-like complication that required two rounds of chemotherapy to bring under control.
In addition to follow-up cardiology care, the Neros are focused on other medical issues: osteoporosis (fragile bones) that requires regular trips to All Children’s for infusions; treatment for autism that was recently diagnosed; and physical, speech and behavioral therapy.
One day, Noah will need a new heart. But for now, he interacts playfully with his two sisters and continues to make progress. He loves to play baseball and basketball, is a big fan of Mickey Mouse and joins his family on 5K runs – being pushed on wheels – to help raise funds and awareness for people with special needs.
“I just know so many people are praying for him,” says Cherish. “He’s a miracle – it’s by the grace of God that he’s here.”
And moving forward, one day at a time, with Noah Strength.