There’s something magnetic about Adrian Favulli. “His personality is full of life,” says his father Steve. “Every day when I drop him off at school, I see other kids go out of their way to say hi to him.” After seeing the same thing happen day after day, Steve dubbed his first grader the Mayor of Munchkinville. “He’s just an awesome kid.”
Seven years ago, Steve and his wife, Lauren, would have been hard pressed to imagine a scenario like this for their firstborn child. When Adrian was 5 days old, the couple received a phone call from the pediatrician’s office. A routine blood screening showed their baby had congenital hypothyroidism. About one in every 3,000 to 4,000 infants is born with the disorder in which the thyroid gland does not produce enough hormones to support healthy growth and development.
They put their arms around us and let us cry
Within eight days of the diagnosis, Steve, Lauren and Adrian had their first appointment with the Division of Endocrinology at Boston Children’s Hospital. “We thought our son was perfect, but according to this test, there was something wrong with him,” says Steve. Between the uncertainty of being new parents and the fact that there had been few medical issues in either of their families, the couple was in uncharted territory. “When we got to Boston Children’s, they put their arms around us and let us cry.”
After confirming the diagnosis, the endocrinology team started Adrian on therapy to replace the hormones his thyroid was not producing. The clinicians assured Steve and Lauren that because they were starting treatment so quickly, Adrian’s condition would not limit him in any way. “We left that appointment feeling confident that our son was going to be happy and healthy, and if anything happened, we would have access to the care he needed right away.”
The perils of going online
From day one, the doctors at Boston Children’s encouraged Steve and Lauren to call them whenever they have questions, especially before they looked for answers on the internet. “They told us, ‘If you go online, you’ll read about very significant complications. That happens when children don’t have access to appropriate care, but it’s not your situation.’”
We were looking at the worst-case scenarios and that was not going to be his reality.
Steve and Lauren learned to heed this advice the hard way. When Adrian didn’t have any teeth peeking through his gums at the age of nine months, his parents turned to Google to see if his toothless gums might be related to his underperforming thyroid. “We read about thousands of cases of kids who never develop teeth,” says Steve. By the time they called the hospital, both parents were upset. “They reminded us that Adrian had been taking replacement hormones since he was 13 days old. We were looking at the worst-case scenarios and that was not going to be his reality.”
A manageable condition
Every day, Adrian takes a thyroid hormone replacement called levothyroxine to maintain his healthy growth, something he will need to do for the rest of his life. This has become part of his daily routine: He takes one of the pills that he calls his “levos” and a multi-vitamin in the morning and gets on with his day. The simple treatment leaves plenty of time to play sports and root for his favorite teams, the Red Sox and New England Patriots. “As a sports fan, he was pretty spoiled this year,” jokes his father.
Every four to six months, Adrian and his parents travel to Boston Children’s where Dr. Katharine Garvey monitors his growth and developmental milestones. As far as the family is concerned, the extra travel time is worth it. “We decided, we’re 40 miles from the top children’s hospital in the world. Why wouldn’t we go there?” says Steve.
Spreading the word
Steve and Lauren recently decided to deepen their connection to the hospital and joined the Family Advisory Council. “We saw it as a chance to stay connected and let other families know about Boston Children’s.”
The Favulli family, which now includes Adrian’s three younger siblings, also participates in the annual Eversource Walk for Boston Children’s Hospital, to help support the hospital that supported them.
“We’re lucky,” Steve says. “Our son’s needs are pretty reasonable. We have what we need to keep him healthy and strong. But I don’t think we’d have that same confidence if we hadn’t brought him to Boston Children’s for care.”
Learn more about the Division of Endocrinology.