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Dr. Linda Addonizio (center in white coat) stands with the pediatric heart transplant team at New York-Presbyterian/Morgan Stanley Children’s Hospital.
The call that Karen and Anthony Violi waited for came in the middle of the night.
A car accident had claimed the life of a five-year-old boy.
His age and blood type made him a suitable donor for her daughter’s heart transplant.
Could they come to the hospital right away?
Victoria Violi was barely five years old.
Less than two months earlier, her doctor noticed an abnormality in her heartbeat. He brought her to New York-Presbyterian/Morgan Stanley Children’s Hospital for further tests.
The heart murmur she had from birth turned into something more serious.
Victoria was diagnosed with restricted cardiomyopathy.
The lower chambers of her heart had difficulty expanding, making it harder to fill with blood. If blood flow were reduced, her heart would eventually fail.
Victoria was immediately put on an organ donor list.
In the greater New York area, approximately 250 people wait for a heart transplant every year, according to the New York Organ Donor Network.
New York State currently ranks next to last, just ahead of Texas, in organ donation.
When a child is placed on an organ donor recipient list, it’s a long road for families, said Dr. Linda Addonizio, medical director of the pediatric cardiac transplant program at New York-Presbyterian/Morgan Stanley Children’s Hospital.
Lauren Shields’ journey was long and perilous. When she was eight, she was diagnosed with viral myocarditis—a disease causing inflammation and damage to the heart muscle.
After being placed on a donor recipient list, her condition deteriorated rapidly and she was put on life support. Every day counted.
“I needed that heart very quickly,” said Lauren.
Karen, Nicole, Victoria and Anthony Violi. Victoria received a transplant at age 12.
She received one six weeks later. After the operation, she suffered a stroke affecting the entire right side of her body. She spent a year in therapy, learning how to walk all over again.
After recovering, Lauren took another extraordinary step.
Along with Sen. David Carlucci (D-Rockland/Orange), she was instrumental in the passage of legislation requiring people to answer an organ donation question when applying for a New York State driver’s license or ID card.
The eleven-year-old girl with the flower in her hair met with every State Senator and Assemblymember in Albany.
Sen. Carlucci said, “Lauren is wise beyond her years. With her advocacy, she put a face on the issue.”
Lauren’s Law passed in June and was signed into law by Gov. Andrew Cuomo three weeks ago.
The law, which goes into effect next year, was modeled on legislation in other states with successful organ donation programs.
“We’ll be going from being last to being a leader in organ donation,” said. Sen. Carlucci.
This past Sun., Oct. 21st, the hospital invited patients and families to celebrate 27 years of heart transplants in children.
1984, the hospital performed the first pediatric heart transplant on a four-year-old boy. They have since performed more than 400.
Dr. Addonizio thanked her dedicated staff and all of the families.
“It is a privilege to care for you everyday,” she said. The hospital presented Lauren with a plaque for her hard work.
Victoria Violi, now 12, attended the ceremony with her family. She doesn’t remember very much about the ride to the hospital in the middle of the night or the surgery. She’s a normal, healthy eighth-grader who likes to paint, listen to music and read.
The last book she read was Reasons to be Happy.
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