Carolyn Macedo recalls the awful feeling in the pit of her stomach. She had never heard the word craniosynostosis when her daughter, Nicole, was diagnosed with it. But she soon understood what it meant. The craniofacial condition causes a baby’s head to develop abnormally due to the premature closing of the seams between the bones.
“When you are told that your child will need to have cranial surgery, you can’t imagine what it feels like,” says Macedo. She and her husband immediately realized that finding an experienced craniofacial team was the first goal. “We needed to know we were in the best hands,” she says. In that regard, they were fortunate: they were informed that Children’s Hospital Boston has one of the most highly regarded craniofacial programs in the U.S. The Macedos live in Canton, MA, about a half-hour away.
While the family waited for Nicole’s surgery, they were introduced to the Foundation for Faces of Children. “It’s wonderful to know that there are terrific people who can help you while you are trying to deal with your child’s craniofacial condition,” says Macedo, who has referred several people to the Foundation.
But she has gone even further by helping direct much-needed funding to the Foundation. Macedo, who is a senior vice president at U.S. Trust Company, became involved in the New England Hi-Tech Charity Foundation (NEHTCF), an organization that raises money for grassroots community organizations that benefit children. “The Foundation for Faces of Children is a perfect example of the kind of organization we support,” says Macedo, who serves on the NEHTCF board. Funds have helped create the FFC web site; videotape, “Understanding Cleft Lip and Cleft Palate: A Guide for Parents;” and also the Spanish version of the videotape. All are key vehicles for reaching out and conveying accurate and reassuring information.
Seeing that her daughter received the best possible care started with good information, says Macedo, who considers herself part of a support network with other parents. “I’ll talk to anyone who is trying to absorb the news that their child has a craniofacial condition,” she says. “I know what it feels like, and I can tell them that most children do very well.
“The stars were aligned for us, and we are grateful,” she says. “Nicole is now a thriving third-grader. I wanted to do something to give back, which is why I have become an enthusiastic advocate for the Foundation for Faces of Children. They have an extra special place in my heart.”
For more information on craniosynostosis, click here.