Family Turns a Rare Heart Condition & Incredible Loss Into a Lasting Legacy in Honor of Infant Daughter
Hypoplastic left heart syndrome (HLHS) is a rare congenital heart issue that affects one out of every 1,000 babies born in the U.S. Cameron Morgan Steinberg, daughter of Sam and Mel Steinberg, was diagnosed with the condition before birth. Knowing the challenges ahead, the first-time parents worked with their team of doctors to put a plan in place for Cami to be treated at the University of Michigan C.S. Mott Children’s Hospital in Ann Arbor immediately after birth.
Mel, Cami, and Sam Steinberg
In babies with HLHS, the left side of the heart doesn’t develop properly in the womb. In a normal heart, red blood returns from the lungs and flows through the heart’s upper chamber (atrium) through the mitral valve to the left ventricle, where it’s pumped through the aortic valve and out to the child’s body. But with HLHS, the left side of the heart isn’t strong enough to pump the required blood for the body’s needs.
Dr. Michael Gaies, a pediatric cardiologist, associate professor, and one of the doctors who treated Cami at C.S. Mott Children’s Hospital, developed a strong bond with Cami and her parents. “They were remarkable advocates for Cami,” Dr. Gaies says. “They pushed us to turn every stone for Cami, and truly made us better healthcare professionals.”
In addition to Cami’s heart issues, she also battled a lung disease that was, ultimately, untreatable. On November 23, 2018, Cami passed away in her parents’ arms at just two months old. Though they were shattered by the loss of their daughter, they turned that heartbreak into an effort to honor Cami’s short life, launching the Cameron Steinberg Foundation to raise money to help other families affected by congenital heart disease.
“This is a special family, to take a tragedy like this and turn it into something good in the world,” says Dr. Gaies. He believes so strongly in what Mel and Sam are doing that he nominated the Cameron Steinberg Foundation’s newly established golf fundraiser to receive a $10,000 donation from the Dormie Network as part of a charitable giving effort with GolfStatus.org, and it was selected as the winner.
“This is a special family, to take a tragedy like this and turn it into something good in the world.”
“It’s hard to describe the sadness we as Cami’s doctors and nurses experienced when we came to the conclusion that we couldn’t help her,” Dr. Gaies says. “The work this family is doing to honor her short life and help other kids and families have a better outcome is nothing short of incredible, and it’s so meaningful to be able to contribute to that.”
“The work this family is doing to honor her short life and help other kids and families have a better outcome is nothing short of incredible, and it’s so meaningful to be able to contribute to that.”
Shortly after Cami’s passing, Sam and Mel used the proceeds from shirts that were sold bearing the #CamiStrong logo to donate 100 copies of the book Zipline (written specifically for kids who have undergone open heart surgery to help them feel comfortable with themselves and their surgical scar) and almost 400 stuffed animals to the hospital for current and future heart patients. In addition, a Comprehensive Single Ventricle Clinic was created at C.S. Mott Children’s Hospital in Cami’s honor. The clinic provides support for patients and families leading up to and after open-heart surgery. “Thirty years ago, kids born with single ventricle heart conditions like HLHS didn’t have much in terms of treatment options,” says Dr. Gaies. Now, he explains, kids are generally expected to survive through childhood. Though Cami had other complications that made that impossible, Dr. Gaies says this clinic was established to help other pediatric heart patients deal with the unique medical and behavioral needs they’ll face over the long-term.
The second annual Cameron Steinberg Foundation Charity Golf Classic will be held on May 23, 2022 at Tartan Field Golf Club in Dublin, Ohio. Gaies describes how he chatted with Cami’s family about golf on many occasions throughout her stay at C.S. Mott Children’s Hospital and how it was a natural progression to using the sport to raise money for the Cameron Steinberg Foundation. “Golf is an easy way to rally support for a great cause,” he says. He admires the Steinbergs’ commitment to making a direct impact on families grappling with the challenges of congenital heart conditions with every dollar raised through the Foundation.
“Golf is an easy way to rally support for a great cause.”
“I couldn’t be more thrilled to help this family,” says Dr. Gaies. “This donation is going to help them do great things!”
Mel and Sam Steinberg pose with Dr. Michael Gaies at the Cameron Steinberg Foundation’s first annual golf fundraiser.
ABOUT THE CAMERON STEINBERG FOUNDATION
The Cameron Steinberg Foundation was established in memory of Cameron Steinberg, who lost her battle with Hypoplastic Left Heart Syndrome (HLHS) as an infant in 2018. In honor of Cameron and other families that have lived through similar pain, her parents established the Foundation to increase awareness for all congenital heart defects and raise money that makes a difference for HLHS patients and their families.