When Mikey Tibbetts’ parents, Johanna and Matt, take him trick-or-treating, the process can last for hours. “He knows everyone and wants to stop and talk,” laughs Johanna. “We call him the mayor.” Indeed, the “super-smart” 9-year-old has even memorized the entire map of his hometown in southeastern Massachusetts.
Mikey’s popularity extends to Boston Children’s Hospital, where he sees a diverse team of clinicians in specialties ranging from nephrology and endocrinology to gastrointestinal motility and orthopedic and plastic surgery. But perhaps his longest — and closest — relationship there is with Dr. Carlos Estrada, Boston Children’s urologist-in-chief.
A life-changing procedure
Mikey was born with VACTERL association, a constellation of congenital anomalies that can affect a child’s vertebrae, heart, kidneys, limbs, anus, trachea, esophagus, or some combination of these. What’s more, his bladder could only hold 10 cc of urine. While early surgical procedures had focused on saving him, his quality of life was still poor: “He was leaking urine and having a lot of urinary tract infections,” says Johanna. “He was in terrible shape.”
In 2016, Mikey came to Boston Children’s Department of Urology for reconstructive surgery with Dr. Estrada and his team. The reconstruction included the Mitrofanoff procedure, which uses the appendix to create a channel between the skin and the bladder. Dr. Estrada also created a new “bladder” from his intestinal tissue, which can hold average amounts of urine. As a result, Mikey’s urinary tract infections have greatly improved and he no longer experiences leakage.
“What he’s done for Mikey is amazing,” says Johanna. “The fact that they crossed paths feels like a miracle.”
The best Christmas gift
So, too, does the fact that Mikey’s and Johanna’s paths crossed. When they first met, Mikey lived in a foster home with several other medically complex kids. Johanna was his nurse and was quickly charmed by him. “He was my primary patient and we just fell in love with each other,” she says.
At the same time, Johanna had also fallen in love with her now-husband, Matt. The pair soon become Mikey’s support team, bringing him on outings to the New England Aquarium and other fun destinations. “We realized we never wanted to lose touch with him,” she says. After Johanna and Matt got married, they filed the paperwork to adopt Mikey, which was approved just before Christmas in 2019.
Positivity and perseverance
Today, Mikey is part of a big family that includes five older brothers and sisters from Joanna’s and Matt’s previous marriages. He loves playing basketball, riding his scooter, building fantastical cities in the video game Block Craft, and excels at math and writing. His relationship with Boston Children’s is far from over: He recently underwent hand surgery with orthopedic surgeons Dr. Carley Vuillermin and Dr. Andrea Bauer. When he’s at the hospital, he likes to check in with his friend Dr. Estrada, asking if he still drives an orange car — Mikey’s favorite color. (For the record, his new car is white.)
Through it all, Mikey perseveres and keeps smiling. “He is the most loving, positive, and resilient kid,” says Johanna. And he’s as popular as ever. “Mikey runs the world,” she laughs. “We all just live in it.”
Learn more about the Department of Urology.
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