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As a disability expert, my whole career has been spent giving parents advice. I’ve given advice on parenting, doctors, child development, school and resources to support them. I was confident working with families and helping them navigate the often crazy and overwhelming world of special needs. But when I was 34 weeks pregnant with my own child, I found myself on the other side of the situation. …
Jack Dolan came into the world with a laugh. His mother, Erin, was mid-chuckle during labor when he was born — “a really joyful entrance,” she says. Looking down at her new son, she and her husband, Jimmy, breathed sighs of relief. “We took one look at him and thought, ‘He’s beautiful,’” she remembers. “We knew then that everything was going to be okay.” …
Learning that your baby has a cleft lip or palate can be upsetting, but these birth defects are quite common. They occur early in pregnancy when tissue from each side of the head grows together to form the face. If these tissues don’t completely join, the result is a cleft, or gap, on one or both sides of the upper lip. A cleft palate occurs when the tissue that forms the roof of the mouth doesn’t fully come together, leaving an opening between the mouth and nose. …
For some families in the waiting room on the day of the Apert syndrome clinic, it’s a reunion. For others, it’s a revelation. Coming to Boston Children’s Hospital from as far away as China, some have never met another child with Apert syndrome. Before long, parents and kids of all ages and ethnicities are taking group selfies as the younger children run around and play.
“These kids have the brightest smiles, they’re very resilient,” says Tambra Milot, mother of 3-year-old Madilynn.
Each year, the clinic sees about 50 children with Apert syndrome, a rare genetic disorder in which the skull, face, hands and feet develop abnormally. The clinic is held at least twice a month, bringing together the specialists each child needs to see. Today, families are also here for the weekend, to exchange information and learn about the latest research at Boston Children’s 2016 Apert Family Symposium. …