Family turns grief into foundation to fight congenital heart defects
BY NOUR HABIB World Scene Writer
Thursday, May 24, 2012
5/24/12 at 5:19 AM
Mark Hilsheimer wears a bracelet that says, "I'm not afraid of anything, Daddy."
Those were the words that his 3-year-old daughter told him last summer the night before her third heart surgery.
Lauren Hilsheimer was born with multiple congenital heart defects. She was diagnosed before birth, and her parents were able to plan for her care.
Mark and Kirsten Hilsheimer went to give birth in Dallas, home to one of the best children's cardiology programs at the Children's Medical Center of Dallas.
"We wanted a first-class facility," said Mark of choosing the Dallas heart center. "Not just great doctors. The best doctors."
Lauren had more than six heart defects, resulting in a hypoplastic right ventricle. Essentially, her right ventricle did not form. The treatment for this condition requires a three-surgery procedure to re-route blood flow.
Lauren's first surgery took place 10 days after her birth. She bounced back well, and the family was able to return home less than a month later.
At four months of age, it was time for the second surgery. That, too, went well.
"(Lauren) defeated the odds over and over," Mark said.
Her oxygen levels were better than her doctors predicted when she was born, she met every developmental milestone, and her doctors were amazed at how well she was doing at every appointment.
After she turned 1, her parents "started just letting her be a kid." They enrolled her in a dance class, took her to the library, and stopped sheltering her at home like they had for the first year of her life while they tried to keep her healthy.
"You never would have known she had such a serious heart condition unless you saw the scars (from surgery)," her mom said.
The final surgery
When Lauren turned 3, it was time for her final surgery.
At the end of the procedure, Lauren should have had a "fully optimized heart," her father said.
Although there are always risks associated with open-heart surgery, Mark and Kirsten expected the best, because Lauren had always done so well.
"We went in with a guarded optimism," Mark said.
And the surgery did go well. The surgeon told Mark and Kirsten there were no complications. Lauren headed to the recovery room, and her family waited.
But shortly afterward, two chaplains were sent to Lauren's parents. Their 3-year-old daughter was in cardiac arrest.
"We really were in disbelief," Kirsten said. She even told the chaplains they must have the wrong family.
The cardiac arrest Lauren suffered was unexpected, and doctors told Mark and Kirsten they didn't know why it happened. Doctors worked on Lauren for two days, but the cardiac arrest had led to severe brain damage.
On July 22, 2011, two days after the surgery, Lauren died.
The family said their goodbyes to Lauren in the hospital room, and Kirsten said one of the hardest things was having to explain to her 5-year-old son that his little sister wasn't coming home.
"She was just the most beautifully magnificent child," Kirsten said of her daughter. "She had these eyes that had a deeper wisdom."
And her parents never forget those words of courage she said to them before her surgery, engraved in their minds as they are on Mark's bracelet.
"We believe there was something greater moving through her to tell us that," Kirsten said.
For a long time, it was all they could do to remember how to eat, sleep and otherwise function on a day-to-day basis.
Then they began thinking of the inspiration Lauren had been for everyone, and decided that they wanted to share their daughter's goodness and purity. The idea for the Lauren Elise Memorial Foundation was born.
According to the Centers for Disease Control and Prevention, congenital heart defects are the most common type of birth defect in the United States. Every year, about 40,000 babies are born with a congenital heart defect.
"The Lauren Elise Memorial Foundation's mission is to support awareness, research, diagnosis, and treatment of congenital heart defects (CHD) in children, and to provide for the care and well being of children affected with CHD and their families," according to its website.
The foundation was approved as a 501(c)(3) tax exempt non-profit organization in December, and is hosting its first fundraising event on June 1-2, the same weekend that Lauren would have turned 4.
A fundraising dinner is set for 6:30 p.m. June 1 at Five Oaks Lodge, 528 E. 121st in Jenks. Tickets are $85 per person, $160 per couple, or $1,000 for a table of eight. Items will also be up for bidding at an auction during the event.
On June 2, the foundation is hosting a golf classic at White Hawk Golf Club, 14515 S. Yale Ave. in Bixby. The event will start with lunch at noon, followed by a 1:30 p.m. shotgun start for the tournament. Cost is $75 for an individual player or $280 for a team of four. Numerous prizes will be available.
The proceeds of both events will go to The Children's Hospital of Saint Francis - which opened a heart unit in 2008 and is working toward making it a world-class facility - and the Children's Heart Foundation, a research-granting foundation in Chicago.
To donate or register for either event, visit tulsaworld.com/laurenelise Donations can also be mailed to: Lauren Elise Memorial Foundation, PO Box 101, Jenks, OK 74037-0101. For more information or to donate, email firstname.lastname@example.org.
Original Print Headline: Lauren's legacy of hope
Nour Habib 918-581-8369
Mark and Kirsten Hilsheimer hold a picture of their 3-year-old daughter Lauren Elise Hilsheimer, who had a heart defect and died less than a year ago after complications from the surgeries. The family has set up a memorial foundation, which is having its first fundraiser (a dinner and golf tournament) this weekend, to fund research of congenital heart defects. CORY YOUNG / Tulsa World
Mark Hilsheimer wears this bracelet in memory of his daughter, Lauren, who died from complications from surgery for her heart defects. CORY YOUNG / Tulsa World