Sunday morning is The Children’s Heart Foundation’s annual San Antonio Congenital Heart Walk presented by University Health at Morgan’s Wonderland Sports Complex.
Families, friends, survivors and loved ones will walk in step to help and remember babies affected by congenital heart defects.
It affects one in 100 babies annually.
That equates to around 40,000 infants a year born with structural deficiencies or abnormalities to their hearts and blood vessels.
A diagnosis can be scary and isolating for children and their parents, but there is a community in San Antonio that can offer support when it is needed most.
It is something Jeremy and Courtney Bedford said they found after their son Frankie was born with serious heart complications.
“When we became pregnant with him, we were just ecstatic to be pregnant at all, and everything was going really well,” Courtney Bedford remembered.
But Jeremy Bedford recalled something irregular happening during one of his wife’s regular checkups.
“The sonographer was hovering,” he said. “I’m not in the medical field, but she was scanning over a spot several times for, I would say, probably like five to 10 minutes.”
They said after the appointment they were asked to wait, which was also unusual.
Both said they waited for hours without being told why, but said they were hopeful everything was still fine with her first pregnancy.
That was until Courtney Bedford’s obstetrician finally came in and spoke to them.
“It’s kind of just burned into my brain,” Courtney Bedford said. “She showed us a picture of a perfect heart and then she showed us our baby’s heart, and you can only see two of the four ventricles of his heart, and she just said this is very concerning.”
The OB referred her to specialists, who delivered a diagnosis of Tricuspid Valve Dysplasia as well as a closed pulmonary artery and said her son would need heart surgery.
“We never heard anything like this. I just started crying, I think I was just kind of like numb,” she recounted.
“My instinct is to fix a problem, and I couldn’t fix this problem, and that weighed heavy on me,” Jeremy Bedford said.
The Bedfords said at birth, Frankie showed the medical team in the delivery room that he was a fighter.
“He came out screaming. They were (in) disbelief at how strong his lungs were, how beautiful he looked, how his color was perfect. He wasn’t too pale, he wasn’t to pink, not blue at all,” Courtney Bedford said.
She also said amazingly, she was able to hold him for almost a minute, and her husband was able to cut the umbilical cord.
But she said after procedures to open Frankie’s closed pulmonary artery failed, he was scheduled for surgery.
Frankie was three weeks old.
“Pretty much his entire life after that first surgery was tubes, wires, machines, constant beeps,” Jeremy Bedford said.
Twenty-four hours after the first surgery, Frankie underwent another heart surgery.
Frankie would never leave the hospital, but his parents had determined every day Frankie would be surrounded with his family’s love.
“If we weren’t there, my mom and dad were there,” Courtney Bedford said. “And so he always knew someone who loved him more than anything was there in the room to support him and advocate for him if needed.”
“I think that’s the reason he lived so long and fought for everything that he did, was because he knew we were there supporting him,” Jeremey Bedford added.
In the midst of their journey, the parents found additional support outside of family and members of Frankie’s dedicated medical team when they learned about and took part in the 2023 Congenital Heart Walk.
“(It was) just to kind of get a better perspective of what’s out there in terms of heart families,” Courtney Bedford said. “We wanted to see warriors who made it through and kind of how they’re doing.”
The annual walk shows families they are not alone.
Families come together to share their stories and hold each other up. Participants include families with babies diagnosed with congenital heart defects undergoing treatment, adult and child survivors, heart warriors and those honoring the warrior angels who have passed from defects.
The walk also raises money for congenital heart defect research.
In January 2024, Frankie, just over six months old, died after his fourth surgery. His parents said the surgery did repair his heart, but his body and his other major organs had begun to fail.
His parents continue to celebrate his life through books, including a book titled “Frankie’s Blue Heart” that they wrote and published.
The illustrations were done by Jeremy Bedford.
“We used to read to (Frankie) almost every single day,” he said.
“We’re very proud of it and we just want to be a resource to family,” Courtney Bedford added.
She said the book details Frankie’s story, but she and Jeremey hope that it can also provide families a basic look of every aspect of the hospital stay, not just heart families.
The Bedfords are the Heart Angel family for this year’s Congenital Heart Walk. They encourage parents and families in need of support to come out.
“It’s a great way to find community and see all of the people who care so much about the heart community,” Courtney Bedford said.
This year’s Congenital Heart Walk is from 8 a.m. to noon Sunday, Oct. 25, at Morgan’s Wonderland Sports Complex.
In addition to speaking at the walk, the Bedfords said they will provide 50 free copies of the book “Frankie’s Blue Heart.”
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