Greg Olsen draws inspiration from infant son's difficult journey

CHARLOTTE, N.C. -- Greg Olsen is a football player all his life, starting tight end for the Carolina Panthers, presumed tough guy. And he marvels at the strength of his infant son, T.J.

"I wish I was as tough as him," Olsen said. "If I was as tough as him, I'd be in good shape. What he's gone through in his first eight months of life is more than any of us have gone through in a lifetime. You know, two open-heart surgeries, the countless medications, the exams; you know he's been through it all, and he just bounces back."

In April 2012, a prenatal diagnosis indicated that one of the twins being carried by Greg's wife, Kara Olsen, had hypoplastic left heart syndrome, a severe congenital heart defect characterized by an underdeveloped left ventricle and aorta. On Oct. 11, two days after birth, T.J. underwent a long, delicate surgery. On Nov. 6, he went home, though the certainty of another complex surgery always loomed. About two weeks ago, T.J. had the second of three surgeries required by the time he's a toddler.

These days, T.J. plays at home with his twin sister, Talbot, and their older brother, Tate, who recently turned 2. In a family playroom, T.J. appears to be the picture of health.

"Even the doctors and nurses say, 'This is a hypoplast (baby)?' " Kara said. "A 'single-ventricle baby' is what they call them. He's so big and he looks so healthy. You know, he's just truly a miracle in every way, shape and form. He just truly amazes us every day."

These are happy times for the Olsens, who want no pity, are determined to help other families facing similar challenges, and treasure every moment with their three children.

"It's almost hard to put into words what (T.J. has) taught us about the true importance of family," said Greg, 28, "and the true importance of what it means to just have all three kids screaming -- but they're home, screaming at the dinner table."

Said Kara: "Having the five of us together is what truly matters."

During pregnancy, Kara knew her son had to weigh at least 5 pounds at birth in order to undergo surgery 48 hours later. He weighed in at 7 pounds, 9 ounces. "It was such a sigh of relief," Kara said. (Talbot, born healthy, was a hardy 8 pounds, 1 ounce.)

Almost immediately after birth, T.J. was whisked away to the cardiovascular intensive care unit. "I was able to hold him for about 20 minutes the day before his surgery, but that was the only time I got to hold him," Kara said. "And that was really, as a mom, that was probably the hardest thing."

The day after T.J.'s initial surgery, Kara and Talbot were discharged from the hospital. It was heartbreaking, Kara said, "leaving the hospital with only one baby."
"We got through it," Greg said. "We got through it, and we're here with only one more (surgery) to go."

Because of T.J., Greg and Kara have learned about perspective and how to dismiss the "little things" that are, truly, little things.

They felt the generosity of Panthers owner Jerry Richardson -- T.J.'s full name is Trent Jerry, his middle name given in honor of Richardson -- who provided his private plane and traveled with them to Boston to make sure the Olsens received proper medical advice after the diagnosis.

And they came to appreciate the circumstances that led them to the Charlotte area --- which, it turned out, was exactly where they needed to be.

Greg and Kara met at the University of Miami. He was a first-round draft pick by the Bears in 2007, then was traded to the Panthers in July 2011. How perfect: The Carolinas HealthCare System's Levine Children's Hospital in Charlotte has provided T.J. and his family with the best possible care, spearheaded by Dr. Benjamin Peeler, the Chief of Pediatric and Adult Congenital Cardiothoracic Surgery.

Peeler said T.J. "is doing great," largely because of the daily attention he received during his first six months at home. The Olsens were able to afford round-the-clock help as T.J. awaited his second surgery. Particularly with two other infants in the house, it was a full-time job: T.J. had to eat every three hours, with every meal charted to make sure his intake was sufficient; his oxygen saturation levels were checked regularly, as was his weight; he was given medications.

"It was very, very scary," Kara said, "because they stress to you how important it is and how critical this time is."

The Olsens know that most families facing similar challenges cannot afford such care. But they want them to have it.

Before T.J. came along, Greg started a foundation, Receptions for Research, in honor of his mother, who is a breast cancer survivor. The Olsens have since added another arm to the foundation: The HEARTest Yard, which will provide resources for families with single-ventricle babies.

"This is our platform," Kara said. "This is our way to help these families and help these babies."

The idea is to guide families through the critical period between the baby's arrival at home and the second surgery. The Olsens, who are working in conjunction with Peeler, officially will announce the initiative at a June 21 event at Levine Children's Hospital. They expect to begin providing financial assistance to families this summer.

There will be "no insurance companies to jump through, no cost to the hospital," Greg said. "The hospital will administer it, but the funds to provide this care -- to pay for the doctors, nurses, therapists -- will be completely funded through The HEARTest Yard."

The goal is to lower the mortality rate -- which Peeler said is thought to be as high as 15 percent -- between the first and second surgeries. "We feel this is the most tangible, direct way to impact that percentage and change these babies' lives forever," Greg said.

Said Peeler, who estimated that "about a thousand" babies are born each year in the United States with hypoplastic left heart syndrome: "It's really a great thing for the babies, and we really think that it has a chance of making a huge difference as the years go by for their physical and neurological development."

Peeler said that while T.J. still has "a severe heart condition," he has given Greg and Kara this advice: "Now just let's go home, let's let T.J. be a baby, let's go live our life, and we'll catch back up with you in a couple years."

T.J. can travel now; he can play with other children. To the Olsens, that kind of normal never sounded so good.

"Looking back, it's taught us so much as people," Greg said. "(T.J.) has brought us so much joy. He's brought us so many life lessons (and) really opened our eyes to what's important in life and where priorities lay with our family."

"He's changed a lot of lives already, changed ours," Kara said. "(He has) changed our family, but now that it's affecting others positively, it makes us very proud."

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