The wait while a child has surgery can be excruciating for any parent, and Carrie and Brian Mueller are no exception. Even though it wasn’t the first procedure their son, Bryson, had undergone, they were still nervous when the time came for them to hand him over his clinical team. But before a nurse could begin wheeling the 4-month-old into the operating room, his surgeon, Dr. Belinda Dickie, stopped her. “I’d like to carry him in,” she told the Muellers.
“It was such a little thing that was probably second nature for her,” says Carrie. “But it made a huge difference in easing our anxiety.”
Searching for help
Now 18 months old, Bryson was born with a type of anorectal malformation called an imperforate anus. This congenital difference, in which the rectum doesn’t connect to the anus, can’t be identified by ultrasound.
So it came as a shock when, after a healthy pregnancy and delivery, he was almost immediately transported to a neonatal intensive care unit (NICU) in central Massachusetts. As Carrie rode there in another ambulance, she turned to her cell phone. “I didn’t even know the medical name for his condition at the time,” she remembers. “I was just searching things like ‘what happens if a baby is born without an anus.’ It was such a whirlwind.”
Those searches eventually led the Muellers to Dr. Dickie and the Colorectal and Pelvic Malformation Center at Boston Children’s Hospital, but not before Bryson underwent a colostomy, along with genetic testing rule out additional congenital defects. Yet Carrie was determined to get her son to Boston before he had a second major surgery. “Dr. Dickie is one of the top surgeons her field, and she’s in Massachusetts. How could we say no?” she says. “I felt that I would never forgive myself if we didn’t find Bryson the best care.”
Upon meeting Dr. Dickie and the rest of the care team in person, the Muellers knew they had made the right decision for Bryson. “In my eyes, she’s the best at what she does technically, but she also has a wonderful bedside manner,” says Carrie. “She always wants to hold Bryson at his appointments, and she helps calm my fears.”
A honeymoon phase
Top among those concerns: the chance for a ‘normal’ life. “I worry that Bryson will have accidents at school or be made fun of,” she admits. “Dr. Dickie has told me that it’s okay to worry, but she’s going to do her best to make sure he’s socially continent. She’s helped me understand that his challenges are manageable.”
Bryson has now had several procedures at Boston Children’s, including a posterior sagittal anorectoplasty (PSARP), a type of pull-through procedure that is used to repair anorectal malformations in some children. He’s currently in what his mother terms a “honeymoon phase” — still in diapers like most of his peers. Once he begins trying to potty train, it will become clearer whether he’ll require bowel management or another surgery. “I think things may get harder in another few years,” says Carrie. “But I know that he has great care.”
For now, Bryson is “the perfect teacher’s kid,” who loves books, swimming and playing with the family’s dog. And when he does have to visit the care team in Boston, he’s got a good reason to look forward to appointments — his friend Peyton, who also sees Dr. Dickie. Carrie and Peyton’s mom, Nicole, met through an online support group and bonded over their children’s similarities: Along with having similar diagnoses, they were born within a day of each other.
Carrie and Nicole try to schedule their children’s appointments for the same day so the families can hang out and enjoy each other’s company afterward. The two mothers have also started creating welcome baskets for families of NICU babies who have undergone colostomies, with the goal of giving parents the resources they need. “Sometimes you just need a friend who’s been through something similar,” says Carrie. “There’s a lot of help and support out there.”