FORT LEE, Va. (June 23, 2016) -- Matthew Miller had a most difficult reception upon entering the world.
First of all, he was blue in color, the result of a cardiac arrest upon delivery by cesarean.
“They revived him at birth not knowing he had a heart condition,” said his mother, Sharon Hayes.
Three days later, Hayes was told her baby had a heart murmur. At seven days, he was diagnosed with Tetralogy of Fallot, a congenital heart anomaly involving at least three anatomical abnormalities.
To save Miller’s life, doctors performed a heart catheterization procedure at three months and open-heart surgery at six months, said Hayes.
“Without it, he was cyanotic because all of the blood going out to his body wasn’t making it to his lungs to get oxygen, so he would turn blue – what would appear to be a seizure,” said Hayes.
The surgery allowed Miller, who recently graduated from Thomas Dale High School, to see his school-age years, added Hayes. At some point an additional surgery would be necessary or he could “end up with congestive heart failure and die.”
Throughout Miller’s childhood, this specter of reality – surgery at some point and physical limitations – loomed large within the household.
“It was hard on the whole family,” said Hayes, who with husband, Chief Warrant Officer 4 Curtis Hayes (Joint Culinary Training Center), is raising a blended family. “They (Miller’s siblings) would go outside to mow the grass, and Matt could do it for 15-20 minutes and that was all; so he would come inside and help me make dinner or do the laundry.”
Or if the family went to the amusement park, the siblings could go scream their lungs out on the rollercoaster while Miller and his mother took in a less-thrilling theatrical production, Hayes recalled.
Theoretically, children with TOF can lead a normal life, but their existence may be bound by physical restraint that can limit full exertion or participation in some activities. For Miller the child, the latter was true and this caused a sense of isolationism, “starting in the 3rd or 4th grade,” he said.
“It was kind of depressing because you’re just sitting there watching everyone else have fun because you have to take a break for five or 10 minutes to regain your strength and endurance,” he said.
Miller’s parents acknowledged their son’s condition but did not make excuses for him or resort to coddling. In fact, they encouraged him as they did their other children, taking extra measures to protect him. Hayes used her son’s playing days in T-Ball as an example.
“It’s 100 degrees standing on that ballfield,” she said, “so I kept the van ready. When it came time to go to the dugout, I took him to the van, and he sat in the air conditioning and hydrated. Then we went right back out to the field.”
For Miller, accommodation became the norm, either through the efforts of others or himself. To some extent, they ended when he had surgery at age 15. It was complicated, involving tissue donation and other procedures. The results gave him physical abilities he had never before experienced. He described his newfound strengths as a school band participant.
“Before the surgery, I would have to play long notes for an extended period of time,” he recalled. “That was hard for me. I pushed myself to the last breath as far as I could before having trouble. After surgery, I went back to the band a month and a half later, and I could play just like everybody else if not better with longer breaths because I was use to expanding my lungs further.”
The surgery’s success had a psychological impact as well.
“I felt like I was an inspiration to a lot of people at school because of what I overcame,” he said.
Miller’s new being was manifested during his three-month rehabilitation at a facility treating much older patients, said Hayes.
“Here’s a 15-year-old in rehab with a bunch of old guys who had bypass surgeries and they’re racing on treadmills across from each other to see who could go the fastest and longest,” she said. “I’m not only watching my son do something I never thought he could do physically but watching him inspire this little old guy and making a connection most 15-year-olds can’t make.”
Miller’s ordeal resulted in life lessons not experienced by most teenagers. “I now understand how people go through things like this,” he said of his surgery and rehab. “I also understand how vulnerable they are to being hurt afterward.”
With his much-improved physical capacities, Miller still has limitations. He has been advised against smoking or drinking and will need at least another surgery to replace a heart valve in about 10 years, he said.
Looking toward his future, Miller wants to major in bio-medical engineering, partly inspired by his journey to well-being and the promises technology holds in helping people lead fuller lives.
“I just feel like I want to give back to the medical community for what they gave me,” he said.
Miller has plans to attend John Tyler Community College in the fall then Virginia Commonwealth University in his junior year.