Amanda Brown couldn’t shake an uneasy intuition that something just seemed “off” throughout her second pregnancy. During a scheduled caesarian section at her local hospital in North Carolina, her instinct proved to be true.
“I had given birth to my first son by C-section so I knew what to expect,” Amanda says. “But this time around, as the surgeons totally stalled in the middle of the delivery, I thought to myself, ‘it doesn’t take this long to pull a baby out.’”
When her son Jaedin was finally delivered, Amanda and her husband were shocked by their first sight of him.
“Jaedin had a huge mass on the left side of his neck that looked like it was growing out of his ear,” Amanda says. “The doctors told us they didn’t know what the mass was and that they would have to take him to a nearby children’s hospital right away.”
Living in scary uncertainty
There, doctors guessed that the cause of Jaedin’s mass might be a lymphatic malformation (LM), a group of abnormal growths that contain fluid. Yet although they extracted a large amount of fluid from his mass, they were troubled to see that the mass was filling back up with fluid and rapidly changing its shape. It seemed that it might not be a lymphatic malformation after all.
By the time Jaedin was a month old, Amanda’s stepmother went online to search nationwide for a specialist in pediatric head and neck tumors. Her research pointed to Dr. Reza Rahbar of Boston Children’s Hospital. Quickly getting in touch, the family snapped a cellphone photo of Jaedin and sent it straight to Dr. Rahbar.
“When I saw the picture, I thought it might be an especially unusual presentation of a type of tumor called a cervical teratoma — the mass was remarkably large, almost three times the size of the baby’s head,” says Dr. Rahbar, who directs the Center for Airway Disorders (CAD) and the Head, Neck and Skull Base Surgery Program at Boston Children’s and also performs surgeries at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.
“Cervical teratomas typically originate from the left thyroid gland and can engulf the laryngeal nerve located there, which creates narrowing of the airway and some vocal cord paralysis,” Dr. Rahbar continues. “It’s unclear why these teratomas usually appear on the left side, but that orientation is quite characteristic of the condition.”
Another scare ahead
After consulting with Dr. Rahbar about the likelihood of the mass being a cervical teratoma, Amanda and her family decided to transfer Jaedin’s care to Boston.
“Next thing I knew, the Boston Children’s team was getting us on a medical jet,” Amanda says. “An ambulance drove us right out to the tarmac and we boarded the plane for a 90-minute flight from Raleigh to Boston. When we arrived, another ambulance was waiting to drive us right from the gate to the hospital.”
Soon after settling into the Boston Children’s NICU — which included holding a special ceremony to baptize Jaedin with the help of the hospital’s chaplaincy, something that Amanda had been wanting to do since his birth — Jaedin suddenly stopped breathing during a routine ultrasound to see inside the mass.
His airway was so narrow and under so much pressure from the sheer size and shapeshifting of the mass that gently palpitating the tumor with the ultrasound device was enough to pinch off air flow to his windpipe.
Quickly putting a plan in motion, Dr. Rahbar moved to remove the mass surgically, partnering with the interventional radiology team to explore the tumor’s vasculature with a catheter. By guiding a catheter through Jaedin’s veins and into his tumor, they could evaluate whether or not the unique size and roadmap of Jaedin’s blood vessels would put him at risk for excessive bleeding during the tumor’s surgical removal.
Finally, a clear diagnosis: Cervical teratoma
After receiving the green light to operate, Dr. Rahbar went in and over the course of a long surgery was able to safely remove the entire tumor in one large mass. BearBear, a stuffed animal dog “guardian” gifted to Jaedin by Amanda’s grandmother, was by his side throughout the entire procedure.
With the tumor finally out, tissue analysis confirmed Dr. Rahbar’s initial suspicion. Jaedin’s condition was no longer a mystery: it was indeed a cervical teratoma.
“For most kids, once a cervical teratoma is removed, they are cured of this condition for life,” Dr. Rahbar says. “Most children learn how to compensate for the unilateral vocal cord paralysis, with no lingering issues.”
After returning to North Carolina from Boston, Jaedin needed a number of additional procedures over the next couple of years, including a tracheostomy and the insertion of a feeding tube due to prevent food aspiration. He also needed laser surgery to expand his airway. These interventions delayed his speech development until the age of 3, when he was finally able to breathe and eat on his own.
‘A bolt of lightning’
By the time Jaedin was in fourth grade, he overcame these speech-related developmental delays and began consistently making honor roll, demonstrating especially strong math skills.
Today, Jaedin is 10 years old and full of life. He’s a bolt of lightning across the soccer field and doesn’t let the lingering effects of his childhood breathing challenges slow him down.
“Despite breathing a bit louder than everyone else, he’s always one of the fastest runners on the field,” Amanda says. “He doesn’t let anything stop him from doing what he sets his mind to.”