About 1 in 100 children are born with CHDs but Reagan’s defect was highly critical so doctors jumped into treatment and rushed her into open heart surgery at seven days old.
Reagan was in and out of hospitals since birth, undergoing many procedures and two additional open-heart surgeries in October 2019, consequently ending with complications that led to her death five weeks later.
She passed away Nov. 22, 2019.
Devastation hit the family in all of its totality, and their misfortune continues to weigh heavy in their hearts as they walk the earth without their daughter. The family continues to struggle.
But the beautiful thing about this tragedy is that the loss of a child is not where the story ends.
It is where it begins.
In the wake of Reagan’s death, the Norris family created RaeRae of Light to bring attention to CHDs, and the community responded in a grand effort. The mission of the nonprofit is to create awareness and support families affected by Congenital Heart Defects.
Already, since its inception in May 2020, tens of thousands of dollars have been donated to the nonprofit which goes directly to research and to help families with children who have CHD.
Most recently, a bill has been authored to allow the Arizona Department of Transportation to offer a specialty license plate supporting Congenital Heart Defects. The bill was approved by the state Senate and House and signed by Gov. Doug Ducey in April 2021.
About $17 from the sale of each license plate will be distributed by the Arizona Department of Health Services directly to the Phoenix Children’s Hospital Heart Center. These funds will be dedicated to research at the hospital and medical equipment necessary to advance the treatments needed for children with CHDs.
The license plate is expected to be released the end of March.
Mother Amy Norris said the funds will be used in hopes that a cure will someday be found.
“Our mission is to raise awareness and fund research for CHDs and to help other children born with heart defects and to provide individual financial assistance and resources to families as they navigate the journey with their medically complex child.”
A right-dominant unbalanced atrioventricular canal defect is a congenital cardiac defect that is treated as a variant of Hypoplastic Left Heart Syndrome, a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart is underdeveloped and does not form correctly.
Amy spent the majority of time with Reagan, living in hospital rooms and sleeping on small cots, while dad, Ryan, and grandma, Elaine Ekstrom, filled in when Amy needed to be with the other three Norris children. Ekstrom said it was extremely important that someone was there during doctors’ rounds, advocating for Reagan at all times.
“We learned that caring for a medically complex child requires a combination of the medical care team and the family working together,” Ekstrom said.
Every day was a battle, Amy said.
“When Reagan was diagnosed, we didn’t know about CHD. It was a shocker for us and very hard to process,” Amy said. “As we try to move forward in this new normal, we are determined to honor Reagan’s legacy. Although she was only with us for 6.5 short months, she was the strongest, bravest, happiest baby despite everything she endured.”
Despite the tragedy the Norris family has experienced, Reagan’s story struck a chord of positivity in the community — within six months of her death, RaeRae of Light was founded, two fundraisers had been realized, work toward a specialty license plate had been initiated, and by December 2020, $30,000 had been raised.
The specialty plate, which required $32,000 to begin the process, depicts Reagan’s EKG, exclaiming “keep hearts beating.”
“The design has a lot of meaning behind it, and a lot of thought went into it,” Amy said. “We have been working alongside Phoenix Children’s Hospital to help get the word out via social media. We are also looking for opportunities to use the media’s help in spreading awareness of CHDs, our nonprofit in efforts to gain more corporate sponsorships, and to encourage drivers to support this cause which then supports the PCH Heart Center directly.”
PCH Heart Center Co-Director Dr. Daniel Velez, MD, said Phoenix Children’s is grateful to the Norris family and RaeRae of Light for making the CHD specialty license plate possible.
“This is an incredible opportunity,” Dr. Velez said. “We are grateful for their generosity, and that of all who purchase the license plate. This will give hope to families and save lives by providing access to nationally recognized pediatric cardiac care. At the Heart Center, we aim to leverage the latest technology to achieve the best possible outcomes.”
To raise additional funds, the nonprofit typically hosts two fundraisers a year — Rae’s Hits for Hearts, a softball tournament at Paloma Community Park in north Peoria, and Rae’s Hike for Hearts, a family-friendly hike at Thunderbird Conservation Park in Glendale.
“Our second annual Hike for Hearts was this past December and was seven times bigger than our first one in 2020! And our upcoming Hits for Hearts will be on April 24, and we expect a great turnout for that as well,” Ekstrom said.
Congenital Heart Defects are the most common type of birth defect in the United States, with about 1 in every 100 babies born with a congenital — meaning existing at birth — heart defect, according to CDC. About 1 in every 4 babies born with a heart defect has a critical congenital heart defect, like Reagan.
That means 15,000 of the 1.5 million children now living in Arizona may need complex cardiovascular care at some time in their young lives.
Additionally, babies born with a critical CHD need surgery or other procedures within the first year of life, many within the first days of life, according to the health organization.
Despite this reality, Amy said CHDs are grossly underfunded and lacking awareness.
Raegan was diagnosed with Hypoplastic left heart syndrome, a critical CHD that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly.
Heart Center Co-Director Wayne J. Franklin said philanthropy is vital to the efforts at Phoenix Children’s Heart Center.
“Our vision to help transform the Valley and shape the future of healthcare can only happen with community support,” he said.
CDC researchers found that in 2009 hospital costs for patients with a CHD exceeded $5.6 billion and costs were highest if the patient was less than a year old.
Amy said that can be a heavy financial burden for the family, especially if they don’t have insurance and must continue to work as their baby is hospitalized.
She spent weeks in and out of Arizona and hospitals, but was very fortunate because she was able to work remotely as she sat bedside with Reagan, who was never left alone, Amy said.
Many parents who have children with CHD are not as fortunate, she added.
For this reason, RaeRae of Light provides individual financial assistance and resources to families with children diagnosed with CHD. This could include a wide range of help from mortgage and health care payment assistance to help with utility bills and food.
“I was very fortunate that my mom was next door. She helped with sports and taking the kids to school. But not all families are that lucky. We can help. That’s our vision and what we really exist to do,” she said. “There is a definite need to help these families. Leaving a child because you have to go to work is heartbreaking. These babies need an advocate.”
Philip Haldiman can be reached at firstname.lastname@example.org, or on Twitter @philiphaldiman.