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Tiny patient touches many hearts
Friends and strangers have responded to the infant's need for help.
By BETH N. GRAY, Times Correspondent
Published November 27, 2007
Noah Nero's heart defect led doctors to give his parents three choices; they chose surgeries.
[Special to the Times]
SPRING HILL - Noah James Nero was born with half a heart.
The pregnancy of his mother, Cherish Nero, was normal. "My wife took very good care of herself," said Noah's father, Bill Nero.
Sonograms during the pregnancy revealed no problems.
But within 24 hours of his birth Sept. 21 at Spring Hill Regional Hospital, the 7-pound, 7-ounce infant began spitting up blood. And his blood sugar fell. After a feeding, it fell further. A scan showed a heart anomaly.
Noah was transferred immediately to All Children's Hospital in St. Petersburg. He's been there ever since. He's facing multiple admissions at least through age 2.
Doctors presented three options to the parents: compassionate care, meaning take him home to die; a heart transplant; or three-stage surgery beginning as early as a week of age and continuing to age 2. Based on physicians' recommendations, the parents chose the third option.
Said Bill Nero: "A transplant isn't necessarily the thing for everyone." Also, an infant heart isn't readily available. And Noah couldn't wait.
The baby's condition is known as hypoplastic left heart syndrome, meaning the left side of the heart didn't develop. "It's a genetic heart defect," said Bill Nero. "As far as why, they're researching it as we speak," he said.
Noah has a sister, Allison, 21/2, who is fully healthy and romping about the hospital's Ronald McDonald House, where the family is staying. "She asks when her brother can come home," Cherish Nero said.
He can't go home while his heart is being reconstructed. During surgery Oct. 11, a stent was inserted to reroute oxygenated and venous blood through the right side of the heart - for two valves to do the work of four.
"They will put in bigger (stents) as he grows," Noah's mother said, explaining the need for at least two more surgeries. "I can't believe they are capable of doing something like that."
The infant also has a partially paralyzed diaphragm, which inhibits his breathing. Insertion of a breathing tube has damaged his vocal cords.
But the breathing tube came out recently, and Mom and Dad are more comfortably able to hold and cuddle him. Recently, his medications were switched from intravenous to oral.
"He's up to 8 pounds, 3 ounces. So we're going in the right direction," said Bill Nero.
Still, nurses must draw blood daily from the infant for testing. At that size, the baby's body only contains about one cup of blood. It must be replaced.
That's where Amanda Walker, Cherish Nero's best friend, has stepped up. They met at Spring Hill Regional Hospital when expecting their first child.
Walker, a cashier at Home Depot in Spring Hill, arranged for Florida Blood Services and LifeSouth to bring bloodmobiles to the store's parking lot recently.
Although there is no charge to the Neros for the blood Noah receives, Walker wanted to do her share to replenish the blood bank on which Noah is drawing.
A total of 89 pints of blood were donated. Said Nancy Bolles, donor recruiter for Florida Blood Services, of Walker's effort: "She's doing a great thing for all those babies down there." Some children, she noted, use 50 pints of blood a week.
On hearing of the blood drive's success, Cherish Nero said, "I can't believe everybody did this for my little boy."
Blood need is not the only nemesis. Noah remains on a feeding tube, which counters Cherish Nero's determination to breastfeed him. For more than two years, she has been the leader in Hernando County of La Leche League, which schools mothers in breastfeeding.
Noah's situation has forced a lot of changes in the family's lives. Bill Nero, 34, has taken leave from his job of seven years as a science teacher at Hudson Middle School. He also coaches boys football and girls and boys basketball there.
Cherish Nero, 30, left her job teaching Spanish at the same school three years ago to raise their daughter. Now, she's between tending to Noah and engaging youngster Allison in play with other children at the Ronald McDonald House.
Bill Nero returns to Hudson once a to supervise basketball practice and attend his team's games.
While the family has health care insurance, travel and meals out have taken a monetary toll. A trust fund has been established at Bank of America.
Daily updates on baby Noah's condition are available at www.carepages.com. Create an account, then enter "noahsquest."
Also, donations may be made to the family at Bank of America, where a trust fund in the name of Noah Nero and Family has been established.