On their 22nd birthday tomorrow, Sarah Ouslander will present her twin brother, Matthew, with a gift that is not only from the heart, but for it.
Sarah, a marathon runner, has organized Miles for Matt, a 5K race to benefit the Johns Hopkins Division of Pediatric Cardiology and children who suffer from heart defects, like the one Matthew has lived with since birth.
She expects about 100 people to run or walk the course at Millersville's Kinder Farm Park tomorrow morning. Among them will be the doctors who have treated Matthew since he was born.
Matthew will be there, too, but he'll walk. He doesn't run. It is one of the upsides of what he calls his "little heart defect" - it got him out of gym class and similar activities. His most strenuous sport, he says jokingly, is clicking the TV remote and the computer mouse.
That attitude is what Matthew's father, Arthur Ouslander, admires most about his son - and why his Severna Park family and his doctors believe he is thriving today.
"He really is my hero; he's the bravest guy I know," Arthur Ouslander said. "There are a lot of reasons he's here today, but first and foremost it's because he's very courageous."
Matthew, a senior at the University of Maryland, Baltimore County studying computer science, began fighting for his life the moment he was born. Immediately, his parents knew something was wrong. His lips were blue, a sign he wasn't getting enough oxygen. Doctors weren't sure why, or if they could fix it.
"Quite frankly, his odds for survival were not very good-about a 5 percent chance," Arthur Ouslander remembered.
The odds improved slightly when doctors determined Matthew suffered from what is known as transposition of the great arteries, or TGA, a condition in which the aorta and the pulmonary artery are reversed. Matthew also had a hole between his heart's two ventricles. Finally, the vessel that carries blood to the lungs was smaller than normal and needed to be enlarged.
Eight out of every 1,000 babies are born with heart defects. But fewer than 1 percent of the babies with heart defects suffer from those afflicting Matthew, according to Dr. Richard Ringel, an associate professor of pediatrics at Hopkins who has treated Matthew since he was 5 days old.
Rarer still: His twin sister, curled up next to him in the incubator, was healthy.
When Matthew was 6 months old, doctors performed the "blue-baby operation" - named for the bluish cast to the skin when the blood is robbed of oxygen. The operation also is called the Blalock-Taussig shunt, after the two Hopkins doctors who first performed it in 1944.
At 2 years old, he had surgery to redirect his blood flow.
At 6, he underwent major open-heart surgery at the University of Alabama, a pediatric heart center. He spent his seventh birthday in the hospital.
His father told Sarah and her older brother, Jake, that Matthew was having an operation to make him feel better. He didn't want them to worry the way he did.
"One day, I'm playing with my child in the pool, and I know that the next day, he's going for open-heart surgery, and there are significant risks, that he could die," he said. All Matthew remembers is the birthday cake, the hospital toys and the T-shirt he wore home. It said: "I've had a change of heart at the University of Alabama."
Since that operation, Matthew has been outfitted with three pacemakers. He takes pills to control the arrhythmia he's developed because of scar tissue from the surgeries. Twice a year, he has follow-up visits at Hopkins, and his appointments often lead to more procedures; earlier this month, he had a cardiac catheterization to measure the pressures on the heart.
Some children Ringel treats focus on their limitations. Some suffer emotional trauma.
"I don't think we've ever seen any of that in Matthew," said Ringel. "He's quite well-adjusted. How he's managed to do this over the years, I don't know, but it's quite remarkable."
To the Ouslanders, the care Matthew received - first at the University of Maryland and later at Hopkins when his doctors moved there - has been just as remarkable.
Sarah Ouslander, grateful for the care her brother has received, often wondered if there was a way to help others who couldn't afford such treatment. A runner since high school, she came up with the idea of a race to honor her brother and the doctors who saved his life.
This spring, as she was preparing to graduate with a business degree from the University of Maryland, College Park and leave for New York City to work with a consulting firm, she called Ringel to discuss organizing it. Ringel thought it was a "lovely idea."
The Ouslanders kept the race a secret from Matthew until they were sure it would happen. When they finally told him, he wasn't certain about the attention it would bring.
"But as it goes on, I like it even more," he said of the race planning.
For his sister, Miles for Matt has been a labor of love for her best friend.
"I just wanted to make people aware that there's a great hospital here," she said. "Just seeing what they've done for Matt ... all the hard work is worth it for me."
The Miles for Matt 5K Run will begin at 8:30 a.m. tomorrow at Kinder Farm Park in Millersville. Packet pickup will be at 7:25 a.m. Information: Sarah Ouslander, 410-729-1247.
