By: Laura Lane
They need someone who will understand.
Cary Levy, formerly of Merrick, and David Goldberg, formerly of Bellmore, started the Tender Loving Care Foundation for just that purpose. The not-for-profit organization is dedicated to assisting families of newborn babies who spend the beginning of their new lives in a neonatal ICU.
Cary and Beth Levy, and David and Franessa Goldberg, are veterans of the critical-care units, since both couples had children who were there. The Levys and Goldbergs said they experienced the depression and anxiety common among parents who can only stand by and watch their babies struggle to survive. They wanted to help others by providing benefits that didn't exist when they had their babies.
Emily Levy was born full-term, weighing a healthy 7 pounds, 11 ounces. But during delivery, her mother, Beth, suffered a massive placental abruption, or premature separation of the placenta from the uterine wall. Owing to the oxygen deprivation and loss of blood caused by the abruption, Emily was unresponsive after birth and rushed to the neonatal ICU, where she was put on a respirator.
Cary Levy said the seven days his daughter spent in the neonatal ICU were the worst he'd experienced. "I saw more machines than I knew existed," Levy said. "The hours felt like days, and those days moved slowly."
Emily Levy was fortunate. She went home in perfect health, and is now a thriving 4-year-old. But the ordeal left its scar on Cary and Beth. Although their daughter was fine, they needed to show their appreciation.
"My wife and I wanted to do something to give back to the unit, but they said there wasn't any way to directly do that," said Levy. "But the [doctors in the unit] did know of another parent who wanted to give back too, David Goldberg, and they got me in touch with him."
Andrew Goldberg had been born nearly eight months before Emily Levy. Andrew was 5 pounds at birth. Three days later, he turned blue while being fed by a nurse. He was rushed to the neonatal ICU.
Doctors discovered that Andrew had had a stroke and was hypoglycemic. The infant spent 30 days in the neonatal ICU, where he had a few seizures and developed an infection in his eyes that later spread throughout his body. When Andrew was finally released, he began physical therapy. At 4 years old, he's doing well, but continues to receive physical therapy, as well as takes part in occupational and speech therapy.
"When Andrew was discharged, my wife and I said if our issues at home were manageable after a year, we wanted to start an organization to help people to cope and manage what we went through," Goldberg said. "Dr. Jerry Schlessel, my son's doctor at Schneider Children's Hospital at North-Shore and Long Island Jewish, put us in touch with Cary and other like-minded families."
Now the Tender Loving Care Foundation boasts 600 members. David Goldberg went to high school with Cary Levy, but they didn't know each other back then. Goldberg, TLC's chairman, and Levy, its president, have a mission they are passionate about.
"I don't do this for any other reason than to help other families who are going through what we went through," said Goldberg. "Even though the hospital had always provided a social worker, when you're going through something like this, you want to talk to other people that went through it, too."
The Tender Loving Care Foundation has made many changes in the North Shore-Long Island Jewish Health System's neonatal ICU. Every other Tuesday night, members bring in dinner, donated by local restaurants, for parents who have babies in the ICU. Beth Levy, TLC's co-vice president, said parents appreciate the opportunity to remain in the hospital during dinner so they can stay near their babies.
Over dinner, parents can speak with TLC members, who are well equipped to listen. Not only did they have a similar experience, but also they went through a training program given by the hospital's Volunteer Services and Social Work Department. "Members are so passionate about Tender Loving Care," Beth said. "It hits home for everyone in the foundation."
TLC has also redone North Shore-LIJ's parent lounge. "When my son was in the hospital, I spent up to 10 hours a day in the parent lounge, and all they had were a couple of vinyl-coated chairs," said Goldberg. "There wasn't even a refrigerator if you brought any food in. Tender Loving Care became parent advocates, and either provided funds or pressured the hospital system to make the changes."
The parent lounge now has a refrigerator, microwave, coffee machine, reclining chairs and even Internet-ready computers so parents can do research to better understand their babies' medical issues.
TLC donated gliding sleeping chairs for parents who wish to remain overnight with their babies, as well as CPR dolls for parent training classes. "We purchased the first RET CAM, a device to test infant's vision before discharge. Before it was done manually by an ophthalmologist," said Goldberg. "It cost sixty grand, and ours was the first one purchased on Long Island."
The organization also provides transportation money to help parents who are unable to get to the neonatal ICU after hours, as well as for those who must rush to the hospital in an emergency.
And there's a parent support network that matches TLC members with parents who have a baby in the ICU. "We try to put parents together that can relate, like-minded parents," Levy said. "Tender Loving Care lets parents know they're not alone in this journey."
For more information on Tender Loving Care or to donate food for Tuesday-night dinners, call (516) 1-866-NICU-TLC, or visit www.TenderLC.com.
Comments about this story? LLane@liherald.com or (516) 569-4000 ext. 236.
