Get Healthy

There was a time Gavin Matusak’s family wasn’t sure he’d survive the day, much less be able to travel to Florida for a Disney vacation.

But then, the little guy has beaten some incredible odds.

With the support of family, doctors and a new technology at the Cardiac Critical Care Unit at Children’s Memorial Hospital in Chicago, Matusak was healthy enough to make the trip. And with a gift in June from the Association of Insurance and Financial Advisors of Northwest Indiana, under the auspices of its “Make a Dream” program, the cost of the vacation was covered.

Matusak, who turned 3 on July 8, was born with a combination of four related heart defects that commonly occur together, called Tetralogy of Fallot. He also has pulmonary atresia, where his pulmonary valve was completely obstructed.

He had his first surgery at 8 weeks old, and since then has had five surgeries, including two open heart procedures which put a cow jugular in as his pulmonary artery before that was removed and tissue from a cadaver was inserted, which is scheduled to last four years.

“Not having surgery for four years, it’s like we hit the jackpot,” says Matusak’s mother, Melissa Matusak, who with her husband Rick has also been caring for Matusak’s brothers who are 1 and 7 years old.

“It’s definitely been a roller coaster ride . . . trying to shuffle it all, we’re trying to be supermom and superdad.”

But all superheroes need a little help, and for the Matusaks, that came in the form of Dr. Jason Kane and the INVOS System, a noninvasive technology that monitors vital organs for receiving adequate oxygen. He learned about the system as a trainee and brought it with him to Children’s Memorial in 2006 where he began to use it on Matusak.

It was met with skepticism that was noticed by Matusak’s mother. For her, however, the device that attaches to the body like a sticker was a “comfort blanket.”

“What she was seeing was the hospital’s learning curve,” Kane says. “Over time it’s caught on.”

Kane says the technology is now a standard practice for heart surgery patients and in select intensive care patients. Kane says the technology has become such an important part of the hospital’s practice that if he had a child who would benefit from the technology and a hospital didn’t have it, “I would look elsewhere.”

Matusak’s mother calls Kane the family’s guardian angel, because without him, Gavin wouldn’t have been able to take the trip to Disney World, which he did in July.

Melissa Matusak says the trip started out with a minor scare, an ear infection, but it was quickly treated, and Matusak and his brothers spent the rest of their Florida vacation visiting with Winnie the Pooh and Tigger and racing from one attraction to the next. At the Wide World of Sports, Matusak was able to throw out the first pitch for a tournament where the Indiana Rebels were playing. The team “adopted” Matusak during their season, filling his room with Elmo balloons and cards each time he had been in the hospital. “He loved the fireworks and the airplane ride,” Melissa says. “From start to finish [the trip] was exciting for him.”

Since the trip, Matusak is beginning to be weaned from some of his medicines. For example, with one drug, he has gone from taking it four times a day to only twice a day.

“It’s not easy trying to give a toddler medicine,” his mother says. “He’s doing good. We’re doing good.”

“If you ask him, ‘Where’s your boo-boo?’ he’ll show you his chest,” she says. “But he wants to be a typical toddler and stay out of the hospital.”