On Jan. 24, Hayley Owino scheduled a heart surgery and bronchoscopy at Lucile Packard Children’s Hospital Stanford in California for her 5-year-old son Gordon. The next day, someone from the heart center informed her could no longer provide medical care for her son.
Gordon was born with a hole in his heart and no pulmonary artery, his body couldn’t carry blood to his lungs. He receives “Katie Beckett” TEFRA, a non-income based form of S.C. Medicaid that covers medical costs for disabled children.
After going undiagnosed for one year, Gordon underwent his first surgery in 2013 by a Stanford doctor who specializes in Gordon’s type of congenital defect. TEFRA completely covered his medical expenses.
“Everything (Gordon) is repaired with is cadaver tissue, so it won’t grow with him,” Hayley said. “It’s like maintaining a car, you have to maintain the parts and oil changes. That’s like his heart, they have to keep ballooning those arteries and making sure they’re growing.”
In 2014, Gordon returned to Stanford for another surgery to balloon his arteries and increase his blood flow, and again in 2015 for another heart surgery. But it wasn’t until Jan. 25 when Hayley and her husband, Arnold Owino, of Fort Mill, learned that Medicaid only paid 3 percent of Gordon’s 2014 surgery and nothing toward his 2015 surgery.
Therefore, Stanford was discontinuing his care.
Arnold said the impasse boiled down to a miscommunication about rate between Stanford and Medicaid.
“There’s a difference in rate between California and South Carolina,” he said. “They have to reach an agreement because if the same procedure was performed here it would be a fraction of the cost.”
Knowing that without a valve replacement her son could face heart failure, Hayley contacted Medicaid and Stanford to try to resolve the problem. Then she reached out to local legislators for help.
“It’s so hard to communicate with Stanford because they’re three hours behind us and then having four kids and trying to fight this battle, it’s just been really hard,” she said. “There’s no way I could have ever done it without (S.C.) Senator (Wes) Climer’s help in getting it into the right people’s hands and escalating this matter quickly.”
Stanford and Medicaid have agreed upon a rate and Gordon’s surgery is scheduled for April 13. Hayley said it’s traumatic enough having a child with a severe illness, let alone having to fight for the care that he deserves.
“That’s why I wanted to bring this to light,” she said, “because how many other parents in this state are struggling with kids with disabilities and not being able to receive the care that they deserve?”
She’s thankful Gordon will get the opportunity to receive the best care because she worried her son’s life was in danger.
Arnold said sometimes it’s hard not to feel helpless when dealing with Gordon’s congenital heart defect.
“But seeing everyone work together to accomplish what is best for Gordon is a great example of what can be achieved through teamwork,” he said. “And it’s a great reminder to never give up hope.”
Stephanie Jadrnicek: firstname.lastname@example.org