The right decision at the right time: Choosing pediatric thyroidectomy

In some ways, siblings Adelaide and Declan couldn’t be more different. Nine-year-old Adelaide is creative, artistic, and nurturing. Declan, 7, is “our little athlete,” says his father, Todd. “Soccer, baseball — he’s always all in.”

But the two also have something big in common: they share a rare genetic condition called multiple endocrine neoplasia, type 2. Also known as MEN2, this hereditary syndrome carries a near certainty of developing medullary thyroid cancer. Although most cases of medullary thyroid cancer occur in adults, people with MEN2 can develop it in early childhood. For this reason, children with MEN2 need to undergo regular screening and usually need to have their thyroid gland removed, a procedure called thyroidectomy.

It’s a scenario with which Todd is quite familiar, having undergone a thyroidectomy himself at age 12. His experience was what led him and his wife, Jennifer, to have their children tested for MEN2 as soon as possible.

Planning for the best experience

Todd and Jennifer began planning for the future almost as soon genetic testing revealed that both Adelaide and Declan had MEN2. While the kids underwent regular screening, the couple researched pediatric thyroid surgeons.

“We knew they would need surgery eventually, so we wanted to start the process of choosing a surgeon and hospital early on,” explains Jennifer.

They had time: pediatric thyroid cancer typically grows slowly. Although the family lives in North Carolina, they were willing to travel for the best care. “We didn’t want to just find a surgeon — we wanted to find the best surgeon,” she says.

Their research led them to Dr. Biren Modi, surgical director of Boston Children’s Thyroid Center. It also helped that Todd’s older brother was connected to another doctor at Boston Children’s who knew Dr. Modi.

“Her comfort level with Dr. Modi made us feel even more comfortable,” says Todd.

 A whirlwind trip to Boston

When screening last year identified a slight increase in Adelaide’s calcitonin levels — an indication of possible medullary thyroid cancer — her parents decided it was time to act. In August 2024, the family traveled to Boston for a full day of testing and appointments for both kids.

“Lori Foley, the Center’s coordinator, was great at scheduling everything in one day so we could fly home afterward,” says Jennifer.

The family met with Dr. Modi and Dr. Ari Wassner, the Thyroid Center’s medical director, for a thorough evaluation and to talk through the plan for surgery. Even though only Adelaide’s calcitonin levels had risen, the team and the family decided to plan Declan’s surgery for the same time.

“We knew it would need to happen eventually anyway,” explains Jennifer. “We decided it would be easier for both kids to have surgery the same day, and Dr. Modi helped us feel good about that choice.”

From the OR to the playground

Although Todd was a few years older when he had a thyroidectomy, he was able to comfort Adelaide and Declan that the surgery would be okay. Dr. Modi added to that sense of reassurance when he explained the procedure to the siblings and drew them a picture to show what it would involve.

After two quick procedures — just three hours each — Adelaide and Declan recovered at Boston Children’s and were able to fly home a few days later. Soon, both kids were “sprinting around our local playground,” says Jennifer.

Like their father, they will take thyroid hormone medication for the rest of their lives and have a small scar on their necks. But pathology results from their thyroid glands confirmed the decision to go ahead with surgery.

“Each of them had a small growth on their thyroid, which indicated that we probably chose to pursue surgery at just the right time,” says Todd. “It was reassuring to know we made the right decision.”

Learn more about the Thyroid Center.