Every year, Mason Brown makes a pilgrimage back to Children’s Memorial Hermann Hospital wearing a custom-printed T-shirt emblazoned with the same slogan.
“My heart beats thanks to the awesome CV Surg Team at CMHH.”
Erinn Brown, Mason’s mom, has been embossing those words on her son’s shirts for years, each time noting with pride the growing size on his shirt tag, a tangible testament to the little boy’s success defying a serious and rare birth defect that left him needing three open-heart surgeries by the time he was 3.
Now 7 years old, Mason continues to come back to the Children’s Heart Center at Children’s Memorial Hermann Hospital – not because he has to, but because he wants to.
“I want to show appreciation,” Erinn said. “I want Mason growing up knowing that these people are part of his journey, part of his story.”
The Transition from Patient to Visitor
Each year, Erinn and Mason make the trek to the hospital’s pediatric intensive care unit (PICU), where Mason recovered from three open-heart surgeries to address a severe congenital heart defect (CHD) called hypoplastic left heart syndrome (HLHS).
The syndrome occurs in fewer than 1 percent of live births. With HLHS, the structures on the left side of the heart are so small and underdeveloped that blood cannot efficiently pump through the body, putting the child in immediate danger without medical intervention.
Children diagnosed with HLHS typically undergo a series of three open-heart surgeries over several years to help the heart function better and improve quality of life.
Mason had his first surgery at 5 days old. Called a Norwood procedure, it helped restore blood flow to his lungs. At five-and-a-half months old, Mason underwent a second surgery called a bidirectional Glenn procedure to connect the large, upper vein from his upper body to his lungs.
His last surgery, called a Fontan procedure, connected the large, lower vein to his lungs. Prior to the operation, one of the hospital’s Child Life specialists suggested a casual visit to the hospital to help ease any anxiety the then-toddler had.
“Mason needed to know before his surgery that hospitals help and hospitals heal,” Erinn said.
That was four years ago, but that message of hope and healing resonated with the Browns, spurring a series of return trips to share their gratitude for Mason’s continued recovery.
“I just thought for one day a year, it was really important we get back to the hospital,” Erinn said. “He has so much to be grateful for and be thankful for and that’s why it’s so important to me.”
The Excitement of Seeing a Familiar Face
Today, Mason is an energetic, brown-haired, brown-eyed boy who plays hard at recess and participates in Cub Scouts. He loves playing in the water and goes tubing and sledding on family vacations. Karate classes may be in his future.
“We’ve been quite fortunate,” Erinn said. “Mason’s heart has been his only issue. He doesn’t let anything stop him.”
But Erinn wasn’t always so optimistic about her son’s future.
Erinn was 32 weeks pregnant when Mason was diagnosed with HLHS at The Fetal Center. The life-threatening diagnosis came ahead of Thanksgiving weekend, compounding Erinn’s stress as she processed what the unexpected news meant for her pregnancy and for her unborn son.
Becky Sam, BSN, RN, pediatric cardiovascular surgery nurse manager, was instantly at her side and has remained a fixture throughout her journey.
“Becky said, ‘I’ll be here to hold your hand,’” Erinn said. “And she has been, through everything.”
Making the Rounds with Hearts and Hugs
Recently, the Browns made their annual trek from Katy in the rain, arriving in the waiting area of the PICU to a warm hug from Sam. Mason, per his preference, got a fist bump.
“A very special part of my role is that I get to be present with patients and families through often very difficult times,” Sam said. “Months or years later, when we have the opportunity to see patients and families, it truly brings joy to our hearts.”
With his hands on the arms of a chair, Mason lifted himself off its cushion while his mother recounted a recent family vacation before Sam escorted them to see PICU staff members who remembered him from his surgeries and past visits.
As the three walked, Sam quizzed Mason on the animals and plant symbols marking the different areas of the unit.
Remembering the emotional toll that a PICU stay can create, the Browns typically deliver small tokens for patients, parents and staff to help ease discomfort and brighten their days. This year, Mason handed out heart-shaped cookies to staff while the parents of patients received small stuffed animals, each bearing a zipper specially sewn into the chest, mimicking the scars of open-heart surgery.
Mason capped his visit with a leaping hug for pediatric cardiologist, Matthew Brown, MD, who has performed all of Mason’s catheterization procedures and has scheduled appointments with him twice each year.
Between Visits — and Shirts
Erinn also knows of the possibility her son may one day need another heart surgery.
“We use words like ‘mended’ and ‘better’ when it comes to Mason’s heart,” she said. “We never want to give him the perception that it’s not something he no longer needs to be concerned with.”
Erinn will continue taking Mason to his scheduled heart checkups. She is also committed to their annual PICU visits and ensuring Mason is fitted with custom-made shirts for as long as he will allow.
“I am going to keep making the shirts until he refuses to wear them,” Erinn said. “He wears them proudly. He might start resisting in high school.” Learn more about the life-saving pediatric heart care here.