Teen golfer with single ventricle heart

This is an interesting article about a girl with a similar heart as Harlie will have. They were born with different defects, but in the end, Harlie will have similar heart function - single ventricle - and similar circulation. I know it is fairly long, but the end of the article is especially good. It talks more about living with a heart defect.

TEEN GOLFER PLAYS ON DESPITE HEART DEFECTBy Jill Lieber Steeg, USA TODAY
ENCINITAS, Calif. — MacKinzie Kline knows all about climbing mountains.Born with a complicated heart defect, heterotaxy syndrome, she's missing a pumping chamber, the right ventricle. "She doesn't have as much oxygen in her blood as a normal child, so she always feels as if she's exercising at altitude," says John Lamberti, her heart surgeon at Rady Children's Hospital in San Diego.

Her parents introduced her to golf when she was 5½, figuring it was the most sedate sport. In 2006, she was the No. 1-ranked 14-year-old female golfer in the world, according to the Golfweek/Titleist Junior Amateur Rankings. Last summer, after the U.S. Golf Association allowed her access to oxygen on the course, she qualified for the U.S. Women's Amateur, where the USGA also allowed her to use a cart rather than walk the course.

This month — again with oxygen and a cart — Kline, now 15, is scheduled to play in qualifying tournaments for the U.S. Women's Open and U.S. Women's Amateur Public Links, then compete in an event on the LPGA tour, the top level of women's golf. At the LPGA event, beginning May 31, she'll be the first player in the tour's history to ride in a cart during her rounds.Her story contrasts with that of male golfer Casey Martin, who six years ago won a contentious legal battle to use a cart to play on the PGA Tour because of a rare circulatory disorder in his right leg. Martin's case sparked a debate about whether providing him with a cart would give him an advantage on players who walk. But it set a precedent, and women's golf — from tour officials to the top player — has been more welcoming of Kline."MacKinzie's story is amazing," says Annika Sorenstam, the LPGA's all-time top money winner. She helped Kline get an exemption into the LPGA tournament she is hosting in Mount Pleasant, S.C., after playing with Kline in August in a pro-am event in Utah. Such exemptions let non-tour players into tour events."She has been through so much, yet she carries herself with confidence. … I admire her for everything she has been through and overcome, physically, and I am looking forward to seeing her play more," Sorenstam says. LPGA Commissioner Carolyn Bivens says, "It's very clear that, regardless of whatever challenges she has physically, she thinks she can do anything."If it seems the teenager known as "Mac" to her family and friends is always in a hurry, perhaps it's a reflection of her stark situation. Kline is about eight months removed from her third heart surgery. She dreams of the LPGA tour — she no longer plays junior events, does not plan to play collegiately and has accepted TaylorMade gear and Adidas apparel while remaining an amateur under USGA rules. But her reality is this, Lamberti says: No single-ventricle patient has played competitive sports into their teens, and "technically, she has a shortened life expectancy.""She is rewriting the history of this congenital heart defect," Lamberti says.And she presses on, resolute about making a mark on her terms. "I don't want to be known (only) as 'The Heart Girl,' " she says. "I would love to play golf like everyone else plays golf. That would make me so happy, but that's not the way it is. I want to be recognized for my talent and my hard work."Last July, at a U.S. Women's Amateur qualifier at Friendly Hills Country Club in Whittier, Calif., Kline had her Mount Everest moment. She had depleted her oxygen tank by the 17th hole, and the march to the 18th tee was straight uphill."There was a delay before us," says her caddie, Hugh Montgomery. "She actually had five minutes to sit under a tree and gather her composure. Then she parred 18 to shoot 75 to get in the Women's Amateur. It was amazing."Her mother, Elizabeth, says, "It was a great golf moment — the two of them together, carrying all this oxygen, the food and the water and the clubs. A couple of holes, he literally grabbed her hand and pulled her uphill. I thought, 'That little stinker made the cut.' "Not willing to sit and watch Kline will have a new oxygen-delivery system this year, but even that will take her only so far. The rest, her mother says, comes down to this: "She doesn't like 'No.' "Between shots, the 5-2, 115-pound Kline will hook herself to a continuous flow of oxygen from a portable oxygen concentrator created by San Diego-based SeQual Technologies. Weighing 17 pounds and about the size of a laptop computer, the device takes ordinary air, which is a mixture of oxygen and nitrogen, and runs it through a sieve, separating the two elements. The oxygen is blown to Kline through a nose tube while the nitrogen is pumped out as waste."Mac's unlike any other athlete, say, a pro football player, who can take a few hits of oxygen on the sidelines to help them catch their breath," says her father, John. "They have a pumping chamber (in their heart) that can quickly turn the oxygen in their lungs into oxygenated blood. Mac has to have a steady flow of oxygen." Kline's had three heart surgeries — the first when she was 11 weeks old and her heart was the size of a walnut; the second at 23 months. During the procedures, surgeons rerouted the blood returning from the body to bypass the heart and go directly to the lungs. Today, when she wears bikinis at the pool or the beach, Kline proudly displays the 9-inch scar from those surgeries that runs down the center of her chest.She says in many ways her heart defect has empowered her."It can make you stronger or tougher, or it can just bring you down if you let it," Kline says. "You can choose."Even after her parents steered her toward golf when she was younger, she tried to keep up with other kids on the playground and in gym class. She was a dodge ball fanatic, even though a hard blow to her chest could have been fatal."I wasn't a person who liked to sit down and watch other people play sports or play a game. I'd always try," Kline says. "When I was tired, I'd stop for a little bit, then I'd play a little more."She throws herself into her daily routine. Up by 5:30 a.m., she's at her tutor's by 6:15. (In January, during her freshman year in high school, she began independent study through Pacific View Charter School in Oceanside.) Then she has several hours of golf practice. She gets in a light weight-training session at the gym, and Thursdays she plays The Bridges at Rancho Santa Fe, one of the nation's toughest private courses, north of San Diego.During the spring of 2006, however, Kline began having difficulty focusing on her studies, feeling dizzy and fuzzy in the head. And despite using oxygen on the course in tournaments during the summer, she was struggling to finish 18 holes, spraying shots, sucking air, her cheeks forever fuchsia.She couldn't breathe."We were in denial," says her father, a real estate agent. "She's playing golf, everything's good, she looks healthy, so you think you don't have to worry anymore. But the reality is you always have to worry about it."Kline wouldn't admit there was a problem. Especially not to herself, when she was entered in events such as the U.S. Women's Open, the U.S. Women's Amateur, the U.S. Women's Amateur Public Links and the U.S. Girls' Junior Championship."We saw her pediatrician in May. She said, 'Do you notice how blue she is?' When you live with somebody, you don't notice," says Elizabeth, a flight attendant. Lamberti, the heart surgeon, recommended a stress test to measure the oxygen level of Kline's blood during physical activity. She flunked it. Her parents suggested she skip the qualifiers and undergo cardiac catheterization, a procedure in which a tube is inserted in an artery in a patient's groin and snaked to the heart so a doctor can see problems there."I told them, 'No, no, no, no. I'm going to do it. I don't care,' " Kline says. "I spent my whole season practicing … for these (events). I love these tournaments."Her father adds: "It was brutal. She wasn't going to hear it any other way. Every day, she defies the doctors. When she was born, we were told she wouldn't live past the age of 5. Everything she's doing is out of the box."So my wife and I said, 'Let her do what she needs to do.' If you don't and something happens, you can't live with yourself."Playing two days after release Her father petitioned the USGA for the use of a cart and oxygen during the U.S. Women's Amateur and U.S. Girls' Junior Championship. Initially, the USGA declined on a technicality, saying the Klines hadn't included the request on their entry forms. After media criticism and more review by its medical board, the USGA approved.Martin, now the men's golf coach at the University of Oregon, paved the way for the use of carts in tournaments when the Supreme Court ruled in May 2001 that federal law required a leveling of the playing field for the disabled, including in professional sports.Kline's experience with golf officials "shows that we are more accepting now, eight or 10 years after I went through my ordeal," Martin says. His use of a cart "didn't ruin the game. It did provide drama and interest and provide an opportunity for someone in need."In early August, Kline missed the 36-hole cut in the Women's Amateur at Pumpkin Ridge Golf Club near Portland, Ore. Later in the month, three days after playing with Sorenstam in the Nokia Champions Challenge, she had the cardiac catheterization. John Moore, chief of cardiology at Rady Children's Hospital, repaired a hole in her heart as part of the catheterization procedure. He also discovered a blood clot attached to her heart, which is being treated with medication because an operation would be too risky."We don't have long-term data on single-ventricle patients beyond 20 or 30 years," Lamberti says. "But we know that patients can live that long, we just don't think she's going to play golf at that point. The way we have them hooked up, it's not normal circulation, and it doesn't get better."Mac has a certain exercise capacity. There's no way to add horsepower to her motor. Ultimately, we have an ace in the hole — a heart transplant, or even a very small implantable artificial heart."Doctors told Kline she would always have to play tournament golf with a cart and access to oxygen, she could no longer participate in her favorite hobbies (surfing and riding roller coasters) and she should plan on several weeks' healing time. She was released from the hospital on a Saturday and was golfing by Monday.Significant fundraiser In her spare time, Kline gives motivational speeches and has written a book, Mac's Secret Weapon. She wrote it when she was 8 in collaboration with her first nanny, Marjorie McNamara, and Kline says she always reads it the night before tournaments. It's about living a well-rounded life, being a good sport and a grateful person and not getting mad at life's bad shots.Since 10 she has been national spokeswoman for the Children's Heart Foundation. She set a personal fundraising goal of $1 million and at last tally was at $750,000. The tournament in Mount Pleasant plans to make a donation."She has created an incredible amount of awareness of children with congenital heart defects and what can happen when they put their mind to something," says Bill Foley, executive director of the Children's Heart Foundation in Lincolnshire, Ill. "She has also assisted the CHF in funding an incredible amount of research." When she reaches $1 million in funds raised, Kline says she'll follow her heart — and keep going."I love seeing people happy all the time," she says. "It's weird, but it's what I like to do. I'm alive, so I'm happy. Being alive, playing golf well and having the platform to help people, who wouldn't be happy? I'm just a very lucky girl."THE KLINE FILE Age: 15 (born March 30, 1992)Home: Encinitas, Calif.Family: Parents John and Elizabeth; 9-year-old sister MadisonOn the course: Won the 2002 and 2003 California State Junior Girls' Championships at 10 and 11 (14-and-under division).At 12, qualified for the U.S. Women's Amateur Public Links, made the cut to 64 players, then lost in the first round of match play.At 13, qualified for the U.S. Girls' Junior Championship with the lowest score in the nation: 71.At 14, qualified for the U.S. Girls' Junior Championship (made the cut to 64 players; lost in first round of match play) and the U.S. Women's Amateur (missed the cut to 64 players).In April 2006, she was the top-ranked 14-year-old female golfer in the world, according to the Golfweek/Titleist amateur rankings.Source: USA TODAY research