Katie Accardi isn’t a first-time parent. As mom to 4-year-old Harper, she’s familiar with typical baby behavior, like crying and mild fussiness. In fact, she’s even experienced in caring for a sick child: Harper, who has been treated for bronchomalacia, subglottic stenosis, and other conditions, has been a patient at Boston Children’s Hospital since she was 16 months old.
But when Katie’s younger child, Jack, was screaming and spitting up almost as soon as he was born, she began to doubt her mother’s intuition. “After a while, you start to feel a little crazy,” she says. “I began to wonder if this was normal — or if it was just me.”
Searching for answers
When Jack was born last June, “We knew almost from the get-go that something was off,” says Katie. The infant couldn’t stop crying. While his nurses thought that he was just hungry, he refused to eat, and his blood sugar was low. After a week, Jack’s blood sugar normalized and he went home with his parents. But even with twice-weekly visits from a nurse and near-daily calls to their pediatrician, he was slow to gain weight, screamed almost constantly and projectile-vomited breast milk and formula. “We felt like we just weren’t getting answers,” Katie remembers.
Frustrated, Katie and her husband, Chris, brought Jack to Harper’s physician, who almost immediately suspected that the little boy had laryngomalacia, a congenital anomaly that affects the larynx, or voice box. She recommended that the Accardis bring Jack to Boston Children’s. Two days later, the family had an appointment for Jack with Harper’s otolaryngologist Dr. Sukgi Choi.
A diagnosis of reflux
Dr. Choi confirmed the diagnosis of laryngomalacia, as well as tongue-tie (ankyloglossia), a common anomaly in which the tongue is tethered to the floor of the mouth. Yet she believed something else was in play, especially after Jack vomited throughout the appointment. She told the couple that Jack appeared to have severe gastroesophageal reflux disease (GERD) and explained that he should be seen byDr. Rachel Rosen at the hospital’s Aerodigestive Center.
After meeting with Dr. Rosen and her colleagues Dr. Thomas Martin, nurse practitioner Lisa Hester, and feeding specialist Kara Larson, the Accardis began to feel more hopeful about Jack’s situation as he was treated for both GERD and oropharyngeal dysphagia. “They were really great at helping us understand that some kids just have very severe reflux and that it wasn’t our fault,” says Katie.
Working through challenges
Despite the encouragement, managing Jack’s GERD and swallowing issues has been challenging. After Dr. Choi revised his tongue-tie, Jack needed to relearn how to feed correctly. Under Larson’s direction, Katie and her husband tried giving their son thickened liquids and purees — an approach to reflux that’s often effective — to no avail. When he did eat, it took him about an hour and a half to consume just 4 ounces.
What’s more, Jack developed constant tremors and had to undergo a neurological evaluation to rule out epilepsy and other conditions. It turned out that he developed Sandifer syndrome, a rare but treatable complication of severe reflux in children that’s believed to be a response to the discomfort associated with GERD.
While the process of treating Jack’s reflux, diagnosing oropharyngeal dysphagia and ruling out other concerns hasn’t been easy, Katie says she’s grateful for the support her family has received from the Aerodigestive Center. “Being able to email the Aerodigestive Center team has been a lifesaver,” she explains. “When we’re beside ourselves, we know we can reach out and bounce ideas off of them.”
‘The happiest baby’
Although it’s been a long road, Jack seems to be finally turning a corner. Now 8 months old, he’s able to sit up on his own — a positional change that his mom calls a game-changer in terms of reflux. Working with Kara, he’s now able to safely enjoy solid foods like crackers and fruit through a silicone feeder, which helps him learn to use his jaw for when he’s ready to eat real food on his own. “Our hope is that he will be able to eat solid foods normally by his first birthday and enjoy some birthday cake without the silicon feeder,” says Katie. “But we understand that might not be the case and that this process will take time.”
His symptoms are slowly improving, thanks in part to a prescription for the antibiotic erythromycin, which can help treat some kids with GERD by causing the stomach to empty faster. “We don’t want Jack on any medications he doesn’t need, but this has been really helpful for him,” says Katie.
In spite of his health challenges, Jack is “the happiest baby underneath it all,” says Katie. He loves being outdoors and rocking out to “Baby Shark” during music therapy sessions. “We’ve had to accept that modern medicine is amazing, but a lot of addressing GERD is trial and error and waiting for his body to develop,” she says. “Reflux isn’t a quick fix like a broken bone — and I’m glad I trusted my gut and found specialty care.”
Learn about the Aerodigestive Center.
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