You tend to lean in close to hear the faint, raspy whispers from the sweet, delicate voice. Step back and the chubby-cheeked, beautiful wide-eyed gift of a 7-year-old girl comes into focus and you tend to forget what she’s been through. You tend to push past the scar at the base of her throat from the tracheostomy. You forget the severed vocal cords and jagged 6-inch line that runs vertically down the middle of her chest from two open-heart surgeries, or the stroke that threatened her life, among many other things.
You forget these things when Kennedy Cunningham comes into view, a bright, vivacious, adorable girl. And all thoughts of the pain and suffering she endured just to inhale a gasp of air goes away.
Steve Cunningham is in the pain-and-suffering business of boxing. The former two-time IBF cruiserweight world champion with a granite-like physique doesn’t have to venture far to realize someone in the family is much tougher than he is. His eyes drift toward his daughter Kennedy, who was born with hypoplastic left heart syndrome, a rare congenital disease that occurs when parts of the left side of the heart (mitral valve, left ventricle, aortic valve and aorta) are not completely developed.
Basically, Kennedy was born with half a heart, the size of a tiny strawberry, though she probably exhibits more heart than most. It’s a struggle for her to run around for prolonged periods like other children. She tires quickly. Her coordination is just returning, breaking the atrophy that set in from long hospital stays. Her immune system is weak; a cold can mean another trip to the hospital.
“I feel special; I don’t understand everything that’s happened to me. I just know I have a strong heart,” Kennedy says. “I don’t want to be treated differently.”
Steve and Livvy Cunningham, Kennedy’s parents, don’t. They treat her as they would any child. Kennedy, the only girl and middle of three Cunningham children, goes to a regular school, participates in gym class, plays with other children and illuminates every room she walks into.
She will be ringside next Saturday, when her dad fights Tomasz Adamek on the nationally televised NBC broadcast at 4 p.m. from the Sands Casino Resort, in Bethlehem. It’s a rematch of the 2008 cruiserweight classic that was a Fight of the Year candidate.
During that title defense, Cunningham got up three times from knockdowns and lost by a split decision at the Prudential Center in Newark, N.J. Cunningham (25-4, 12 KOs) has had to wait 4 years for a rematch, though this time it comes at heavyweight.
Steve’s fight with Adamek, a former cruiserweight world champion and heavyweight contender, is nothing compared to the emotional toil he and Livvy endured the first year of Kennedy’s life.
How can they forget?
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In April 2005, 5 months into Livvy’s pregnancy, Steve and Livvy were in a doctor’s office laughing and chatting with an ultrasound tech. It was a routine visit to check on the measurements of their baby, and for Steve, the promise that Little Steve, the Cunninghams’ oldest, would be joined by a baby sister.
Subtle life shifts have a way of resonating. For Steve and Livvy it came when the tech guided the transducer probe to the baby’s heart area, turning a euphoric moment suddenly somber. Something wasn’t right.
“We were hoping it was a girl, and we didn’t sense anything was wrong until the tech left and came back with a doctor, who said he had to talk to us in his office,” Steve says. “We started to wonder what was up and he told us they found a complication. He explained that there could be something wrong with the baby’s heart. I’m from a family where everyone has kids and no one has any health issues, so it was a little hard to take.
“It was emotional. We’re Christians and we believe in what the Bible says, so we had to keep it under control. I had questions myself, ‘Why my daughter?’ I’m an emotional guy, but it all didn’t hit until later. God allowed me to look at it as a fight. That’s the way I saw it. We still have a chance, and if God is here, He won’t put us through this for nothing.”
Yet, Steve and Livvy expressed a gamut of emotions. Sadness, confusion, fear.
“We went there and I remember thinking, hoping someone was going to say, ‘Congratulations, you’re having a girl,’ and for me, I was shell-shocked,” Livvy says. “I remember being emotional that day driving home and Steve was a rock. He’s great in the clutch like that and definitely someone you want to lean on. I was scared. I didn’t know what to think. But for me, nothing was going to be 100 percent real until she was born.”
The next day, the young couple went to the Children’s Hospital of Philadelphia (CHOP) and were directed to the Fetal Heart Program where a new term entered their world: hypoplastic left heart syndrome, or HLHS.
Serious heart defects occur in one in every 100 births. Out of that small percentage, 5 to 10 percent are born with HLHS.
“Kennedy has one of the most complex congenital heart defects,” says CHOP cardiologist Dr. Geoffrey Bird, Kennedy’s doctor. “HLHS is universally fatal without surgery. Some babies have a direct course in the three-part surgery. The surgery allows the body to grow and develop, so the heart can have one main pumping chamber instead of two.
“There’s been real progress recently in how to treat this disease. In the best-case scenario, 90<TH>percent of babies born with this can have that single-chamber heart work well for 10 years or longer. What we learned is we can make the heart work better. Kennedy is a living miracle. She has one of the more complicated courses. What Kennedy went through at birth, only a small percentage of our population needs those extraordinary measures.”
The Cunninghams were offered the option to abort. “We weren’t aborting; that wasn’t even a discussion,” Steve says. “We were hopeful and trying to be as strong as we could be — going into the unknown. It was like flying in outer space without any navigation.”
Livvy kept thinking if Kennedy stayed in the womb, remained where she was, she’d be shielded from this terrible disease. “You’re a mother, and you’d do anything to protect your child,” she says. “But they told us there could be a cure.”
Hypoplastic left heart syndrome can be treated with three surgeries. Kennedy’s first would occur within her first few days, followed by a hospital stay of 10 days to 2 weeks. The second surgery would take place within her initial 6 months and the third by the time she was 2.
If only it was that smooth.
“It spins your perspective on life and you take it a day at a time, so I have a real good idea what \[Steve and Livvy\] were going through,” says Greg Olsen, the Carolina Panthers’ tight end whose 2-month-old son, T.J., was born with the same defect. “It gives you a crash course in reality. T.J. was born on a Tuesday, and the first thing Thursday morning he’s having open-heart surgery. We knew the risks going in. Doctors gave us a wide spectrum of prognoses and told us there were positive stories, and not so positive stories.
“It flips the world upside down on you and makes you appreciate what you have. T.J. is a twin, and he’s only 2 months old now, not doing a whole lot. But you see the two of them, T.J. and his sister, next to each other and you would have no idea. Aside from the big scar down his chest, you wouldn’t know anything was wrong with him. It’s still a disease that can take a life. But everything, thank God, is going well.”
T.J. is home without any feeding tubes or breathing assistance and has been breathing on his own the past month.
“We’ve been fortunate,” Olsen says.
The Cunninghams weren’t as fortunate.
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Kennedy was born on Sept. 6, 2005, at Pennsylvania Hospital. Steve was with Livvy when she was induced. Just 3 days earlier, he had won a unanimous decision over Kelvin Davis in Cleveland.
“I didn’t want to leave her, but we wanted to keep things as normal as we could,” Steve says. “We were going to have breakdowns but not shutdowns. I went off to camp, because then, it was the most important fight of my career. I was promoted by Don King at the time and he didn’t care. There was no way he would have let me back out.”
Steve remained a pillar. His focus during training camp was to beat Davis, and in winning create a better opportunity for Kennedy and his family. “I wanted to be as strong as possible, and I don’t want to sound tough or anything, but I wanted to set an example for Livvy; I didn’t want to break down,” he says. “Oh, it was a great challenge. It was an opportunity to stand on the truths I believe in the Bible.”
When Kennedy was born, the Cunninghams got to hold her for 10 minutes before she was shuttled to CHOP’s cardiac intensive care unit. They wouldn’t hold her again for months. The next day, Kennedy underwent her first surgery. Steve and Livvy received hourly updates until the procedure was over, and were told surgeons were closing her up.
Then the updates stopped. An hour passed. Then another. Tension escalated. It grew when a nurse showed up, accompanied by a doctor, and escorted them to a white conference room furnished with two metal chairs. A minute’s walk felt like a death-row march.
Doctors told the Cunninghams the surgery went well, but Kennedy was losing blood and they couldn’t close her up. They warned them that she might not make it. “I was a mess; I began breaking down and thought the worst,” Livvy says.
“\[I thought\] she was still with us and I kept thinking we still had one more card to play and began praying right there,” Steve says.
The tiny girl literally fought for every breath she took; her heart could be felt beating under paper-thin skin. A day passed. She seemed stronger. “For some reason, we always saw her getting better, despite what we kept hearing,” Livvy says.
With each day, it appeared she was getting better. Then, 2 months later, more trouble. “Doctors came in and told us that they didn’t think she would live, every day they pumped so many fluids into her she blew up to twice her size,” Livvy says. “A major edema was occurring, but she needed the fluids and medicine. We were happy she began urinating.”
But Kennedy’s tiny heart was beaten up. She was on a bypass machine longer than expected and that damaged her lungs. She was so puffy she looked like a mini-sumo wrestler. Some days her eyes were so swollen she couldn’t open them to see her dad grab her petite, doll-like fingers and rub them against his head.
Steve and Livvy spent many long, gut-wrenching dark nights at CHOP. Steve would do his morning run, train and head back to the hospital. Livvy, who was working full time, would go right from work. They juggled their schedules and relied on Livvy’s mom, Randi Vega, to drive up from Baltimore every weekend to give them a break.
They gauged how sick Kennedy was by the number of intravenous drips she had (as many as 10 at a time) for pain meds, heart meds, blood-thinning meds, antibiotics, and what seemed like meds for the meds. There was a Christmas tree of monitors and cords helping to keep her alive.
“It was like a knock-down, drag-out fight and Kennedy was the fighter; she had staph infections that would knock an adult out,” Livvy says. “We’d always ask when we could bring her home until it reached a point we stopped asking. The nurses at CHOP made things so bearable. They knew everything about Kennedy. I was able to work and I knew she was in good hands. I love nurses, especially after everything we’ve been through.”
In the meantime, Steve tried resuming his career. He took a stay-busy fight in January 2006 at Madison Square Garden, stopping Lloyd Bryan in five rounds. He was aiming for a bout with IBF cruiserweight champion O’Neil Bell, but Bell wanted no part of Cunningham and was playing the waiting game.
It didn’t matter. Cunningham was already twisting inside, seeing his daughter propped up with her head back, nonresponsive.
“It bothered me not being able to pick her up,” he says. “Doctors told us when she was 4 months old about the tracheostomy. It would help her breathing and give us the freedom to hold her. I was against it at first, because I didn’t want any more tubes in her. I remember a day coming to see her and she had an IV sticking out of her head. That \[ticked\] me off. Just to see that was crazy. After the nurses explained it, it was OK. But the visual of that was disturbing.”
After the second surgery, in July 2006, Livvy noticed Kennedy’s left hand had balled into a fist and was pulsating. She asked the doctors why it was happening. Ten-month-old Kennedy had suffered a stroke.
A month later, Kennedy was cleared to go home, 2 weeks before her first birthday. She weighed 15 pounds. Her limbs were shriveled and she was hooked up to a ventilator, which Livvy and Steve learned to operate.
They thought they were prepared for anything. They thought. A few months later, they noticed that Kennedy’s eyes had rolled back. There was an obstruction lodged in her tracheostomy tube. “She wasn’t getting oxygen and we acted; we kept our cool and called the ambulance,” Steve says. “I remember putting her on a breathing bag and we kept her alive until the EMTs arrived. After that scare, she’s been home ever since.”
In April 2009, Kennedy had the tracheostomy tube removed. She didn’t begin talking until she was 3, and was almost 4 when she was able to walk. She still gets a strange look or two when children at the playground notice her tracheostomy scar. But Steve and Livvy refuse to see the world through a narrow, angry squint. “Kids do stare, but Steve and I always stressed that we would raise her normally. She’s not disabled and we’re going to treat her like she’s a normal child,” Livvy says. “No one has been really rude. Kennedy’s only real issues are with her vocal cords. It’s kind of a shame, because she likes to sing.”
Kennedy’s third surgery is pending. She might eventually need a heart transplant since her heart, in its current condition, can’t support an adult.
“She is a happy, playful, comfortable girl who’s doing great, considering the criteria for going through all of that,” says Bird, Kennedy’s cardiologist. “We’re thrilled with how far she’s come and don’t see a limit to her horizon. In reality, she may need more surgery down the road. A third surgery or transplant depends on how things go.”
Says Livvy: “As she gets older, things will get more dangerous. It’s why we think every day is a blessing — it really is, she knows how proud we are — proud of her taking a breath.
“She already has my vote for the best little girl in the world. It’s taught us about little victories. It makes you celebrate every little thing.”
Kennedy sleeps without any worries, and that eases her father’s anxiety. His upcoming bout with Adamek could be career-changing. But Cunningham now fights for something more than a payday. His fight is deeper than that.
“I fight with life and death involved,” he says. “It’s like if Kennedy wasn’t here, we wouldn’t be who we are. I know it’s no one’s fault what’s happened. I’m not angry at the world. She’s an inspiration to me. Winning and losing is a lot at stake for Kennedy.
“I have no questions about my faith. I see my prayers answered every day staring me right in the face. Dealing with Kennedy’s situation has made me know what it’s like being a man.
“I fight for her.”