Forming A Fundamental Bond With Palm Beach County's Children
Teegan Lexcen came into the world with one lung and less than half of a heart, a birth defect so severe that doctors deemed her inoperable. Her parents were told the end was less than one month away. Chad and Cassidy Lexcen took her to their Minnesota home in tears after receiving the painful prognosis of their tiny twin, whose sister, Riley, was born healthy. The Lexcens waited, they watched, and they wondered.
More than a month passed, and Teegan was still breathing. They decided it was time to get a second opinion. So the Lexcens took her to Nicklaus Children’s Hospital in Miami, where the cardiac team examined Teegan and agreed to take on her case.
The cardiac team collaborated on a one-of-a-kind open-heart surgery planned using Google Cardboard, a smartphone virtual-reality headset that creates a 3D model of a 2D MRI, enabling them to better visualize her procedure before the operation. The Nicklaus Children’s Hospital team then rebuilt Teegan’s aorta and connected it to her pulmonary artery.
Because her parents didn’t accept the fate the first doctor prescribed, and because they found Nicklaus Children’s Hospital, Teegan turned 2 last August. At this year’s Golden Heart Luncheon, when her story was shared on a big screen in the ballroom at The Country Club at Mirasol in Palm Beach Gardens, the audience sat in stunned silence. The mute wasn’t just because attendees had learned about a child whose beginning easily could have been an ending. It was also because, in that moment, the 330 donors who gathered there to raise money for the Nicklaus Children’s Health Care Foundation understood the importance of their contributions.
Since its inception in 2004, the Nicklaus Children’s Health Care Foundation has raised more than $60 million for pediatric health care. At its forefront are Jack and Barbara Nicklaus.
“I not only enjoy working side-by-side with my wife, but it gives me a great deal of satisfaction to see the impact we are having,” says Jack Nicklaus, the golf great who serves as honorary chairman of the Nicklaus Children’s Health Care Foundation.
When Jack and Barbara Nicklaus’ daughter, Nan, was 11 months old, she swallowed a broken crayon, and it lodged in her windpipe. Gone undetected, it could have been fatal. They took her to a children’s hospital after noticing repeated choking episodes, and doctors performed a bronchoscopy that saved her life. The incident led them to what has become a lifelong passion for bringing first-class pediatrics to their own backyard.
“It is so hard to see your child sick, but when you see them get the care they need and see their smile come back, as a parent, that’s sort of where
I come from with this.”
- Karin Penkala
Nicklaus Children’s Hospital, formerly Miami Children’s Hospital, now boasts a 189-bed critical-care tower housed in a six-floor, 212,000-square-foot building where all patient rooms are private and can accommodate family members for days or weeks at a time. The Nicklaus Children’s Palm Beach Gardens Outpatient Center at Legacy Place made its debut in 2012 and is staffed by specialists in everything from cardiology to endocrinology to gastroenterology. Last year, the De George Pediatric Unit at Jupiter Medical Center opened as a result of a partnership between the foundation and the Lawrence J. and Florence A. De George Charitable Trust. It features 12 inpatient units, a pair of state-of-the-art surgery suites and a room for resting, fittingly called the Bear’s Den.
More plans are on the horizon. This summer, a dedicated pediatric wing within Jupiter Medical Center’s emergency room will open, and next year, a Level II, or more advanced, neonatal intensive-care unit will be up and running.
“The whole idea and premise of this is that we want to take care of children in their community,” says John Couris, Jupiter Medical Center’s president and CEO. “Nicklaus Children’s Hospital has a mission to go where the kids are and to care for the children where the children are. We have similar strategies. Health care is a very local phenomenon. We believe that people deserve alternatives and choices in the market.”
Figures from the hospital gathered between 2015 and 2016 indicate a 24-percent increase in pediatric ER visits and a 25-percent decrease in pediatric transfers.
“As our volume grows, we need to find more space, and we need to give the kids their own space,” Couris says. “Parents and kids, when they’re sick and anxious, don’t necessarily like to be co-mingled with the adults.”
Karin Penkala, a Jupiter resident, was 11 weeks pregnant when the bad news arrived: Soon-to-be-named Grace had Down syndrome, and worse, a congenital cardiac issue that would require immediate surgery after delivery. Penkala and her husband, Joe, searched for a physician they could trust with the life of their daughter. They chose Dr. Redmond Burke of Nicklaus Children’s Hospital, the same doctor who operated on Teegan.
“We were prepared to travel wherever we needed to get the best care for her defect,” Penkala says. “There were several on the table. Nicklaus Children’s Hospital was a blessing for us.”
The couple’s daughter, Grace, had two surgeries—at three months and at 10 months. Now, she is a happy 3-year-old who loves to play with her baby dolls.
“The hospitals are so important to children who are born with medical needs,” Penkala says. “It enables them to go back to being kids again, and that is the best part about a place like Nicklaus Children’s Hospital.”
Grace receives occupational and speech therapy at the Legacy Place location twice each week.
“We’re really proud of all the progress she’s made this year,” Penkala says. “I continue to be thankful, grateful and amazed.”
The Penkalas met the Nicklauses at last year’s Golden Heart Luncheon, where they spoke about their experience. They remain strong advocates of the Nicklauses’ initiative.
“It is so hard to see your child sick, but when you see them get the care they need and see their smile come back, as a parent, that’s sort of where I come from with this,” Penkala says. “That’s been the most amazing part for us.”
In addition to serving children locally and regionally, Nicklaus Children’s Hospital serves patients from all 50 states and 119 countries. What started as a “sleepy little foundation” has evolved into an “eye-opener of a cause,” Barbara Nicklaus says.
At this year’s Golden Heart Luncheon, after Teegan Lexcen’s story was shared, Marie Osmond took the stage as the event’s keynote speaker and special guest. Osmond, a songstress who continues to perform with her equally famous brother, Donny Osmond, can share similar success stories about critically ill children helped by her national charity, Children’s Miracle Network Hospitals.
“I think the greatest revelation in my life is that true happiness and fulfillment doesn’t come from awards,” she said at the luncheon. “It doesn’t come from fame or even loving yourself or all those things. It really doesn’t. True happiness comes from stepping outside yourself and helping other people. It is the greatest joy.”
Osmond co-founded the non-profit in 1983 to generate much-needed funds for children’s hospitals across the country and, since then, has donated nearly $6 billion to 170 institutions in the U.S. and Canada. Nicklaus Children’s Hospital is one of them.
“Winston Churchill—he said, ‘We make a living by what we get. We make a life by what we give,’” Osmond said to the audience. “Isn’t that a great quote? Nowhere is it any clearer to me than with the work that I do for Children’s Miracle Network Hospitals.”
The organization affects the lives of about 32 million children each year, as statistics show 62 patients enter a Children’s Miracle Network Hospitals facility every minute—like one case Osmond remembers well. The patient’s name was Drew. He grew up with brittle-bone disease called osteogenesis imperfecta, and neurocutaneous hypermelanosis, a disorder in the central-nervous system that produces birthmarks all over the body. Osmond describes him as one of her “miracle kids.”
“The reality is that you never know when someone you love will need the services only a children’s hospital can provide.”
- Marie Osmond
“That’s the way I feel about these kids and all of you here today,” she said to the captive crowd. “We become better people because of the things that we’re doing. As we get older, there’s nothing better that makes you feel better about your life, so God bless you all for what you’re doing today.”
Children’s Miracle Network Hospitals exists not only to draw up dollars but also to boost awareness of the need for communities to support medical services for a precious population. It is estimated that 67 percent of those undergoing treatment in children’s hospitals rely on Medicaid, creating a gap between what insurance covers and the actual cost of care.
The two-time Grammy Award nominee—the sole sister to eight brothers, two of whom are deaf—says her family dynamic taught her to appreciate and look out for those with special needs.
“Most people don’t realize children’s hospitals depend on community donations to provide the lifesaving care they’re known for,” Osmond says. “Just think about all the specialized equipment, facilities and services needed to treat kids of all sizes, from preemies to teens. The reality is that you never know when someone you love will need the services only a children’s hospital can provide.”
Barbara Nicklaus’ relationship with Osmond has allowed the Nicklaus Children’s Health Care Foundation to flourish into an international entity with South Florida roots.
“You know how you say hello to someone, and you just kind of feel you’ve been friends with them all your life?” Barbara Nicklaus asks. “That’s how it was with Marie. She’s one of those people you feel privileged to be around. She’s so for the children.”