Benefit planned to raise money for five-year-old
McDOWELL — Patsy Varner took her granddaughter for a standard physical at Highland Medical Center a few weeks ago; she didn’t expect any problems. Ella Anne Varner, 5, needed a couple more vaccinations to start kindergarten this fall.
But when the HMC nurse listened to Ella’s heart, something didn’t sound right.
Two or three consultations with specialists later, Ella’s parents saw an x-ray of their child’s heart. Where chamber walls were supposed to be, there were voids. Empty places. Not one, but 6-7 holes in the little girl’s heart.
Erik Varner, Ella’s step-father, is the son of Patsy and Sonny Varner of McDowell. He married Ella’s mother, Abigail, in April. He enrolled in law school in Charlotte, N.C. Abigail had a good job there. The couple looked forward to starting family life together.
But the news of Ella’s congenital heart condition upended their plans.
“We took her to a pediatric cardiologist,” Erik explained, “and in that middle chamber, there was no divide there, where it was supposed to be. There was nothing there.”
A surgeon at a special children’s hospital in Charlotte told Erik and Abigail that he could try a relatively simple procedure, using a catheter up through Ella’s leg to her heart, where it would open up something similar to a tiny umbrella to fill the void.
He told them he’d never seen the condition this bad in a child so young. He told them he’d schedule something in about three weeks. According to his plan, Ella would be gearing up for surgery right about now.
But that was before Erik learned his insurance company didn’t cover congenital heart conditions. Not even the nearly $2,000 in consultations they’d already had about the problem. And that was before Abigail got laid off from her job.
“We have insurance (United Health Care, through the law school), but the insurance has these exemptions,” Erik said. “One in every 100 children — 1 percent — has this,” he said, “but this was fourth on the list of things they didn’t cover.”
He knew that when he signed up for the policy about a month before Ella’s diagnosis. Like any good law student, he’d read the fine print. But it never occurred to him one of those exemptions would affect his family.
Erik and Abigail began looking for other insurance policies, but because Ella’s condition had been diagnosed, it was preexisting, and therefore, they would have to wait a year.
Presbyterian Hospital Sanger Clinic is one of the best in the area, Erik said. “Every single NASCAR driver donates to it … it’s some of the best care you can get.” That’s where the surgeon works, and he’s the only one who does the catheter procedure.
It would cost $25,000. But, the surgeon cautioned, if that procedure did not work, Ella would need a different pediatric heart surgeon scheduled within the week to perform open-heart surgery. And that would cost far, far more.
“I would love for her to have this; this surgery is so simple,” Erik said. “The next day, she’s up and around. But, there are no assurances. If they do the other, they’d have to stop her heart, put her on a machine, do the work, then close her up, and it would take a lot more time in recovery.”
Once the Varners told the surgeon they didn’t have insurance to cover the procedures, Erik said, “Suddenly he was saying it’s not something she needs right away … and that the costs would be a stress on the family … he wasn’t refusing to do it, but he was just saying ‘think about it; you’re going to have some big expenses.’ When we were first there, he had said don’t wait. There was a lot more urgency to it. Now, we can’t get them to even call us back in a timely manner.”
Most people would not be able to tell there’s anything wrong with Ella, but her parents notice a difference. The heart problem causes some of Ella’s blood to spill over into her lungs, so her lungs are absorbing more of it than they should, Erik explained. “It gets overwhelming, the amount of energy she could have, then the next thing you know, she’s asleep. It’s her body trying to work so hard,” he said. “We’d go for these walks, and now, I end up having to carry her back. She looks like a healthy child, but we’re starting to notice things we wouldn’t have before.”
For example, her parents used to try to get Ella to bed around 7 p.m., but she’d fight it, like all kids do, and often didn’t settle down for a couple more hours. “Now, you put her in bed and she’s out like a light. She’ll sleep 12-13 hours a night,” Erik said.
They now know what the problem is, and they know it can be corrected. But when?
“This has sort of made us feel: how urgent is it? We’ve spoken to so many doctors. The heart looks wrong. I just don’t want to make a mistake … it’s confusing. It’s perplexing,” Erik said.
Erik and Abigail were told initially that Ella’s heart is far too diminished for someone her age, and then, subsequently, they are told the “financial stress” would be too much for them. As any parents would, the Varners decided they want to go ahead and give Ella the quality of life she can have if her heart is repaired — now. “It’s either that, or sit here and wait … we’re not inclined to wait. It’s a stressful time … we want to do what’s right.”
Erik’s parents and friends have organized a benefit dinner this month to help raise the money for Ella’s surgery. “We are so appreciative of the folks in this community,” he said.
Just since their arrival last weekend for a visit, Erik said visits and calls have been an outpouring of support. “Eventually,” he said, “we’d like to take our family back here. Ella needs her family around her.”
The freewill benefit dinner will be held Saturday, Oct. 27 at 4 p.m. at the Stonewall Ruritan Building. For those who cannot attend, donations can also be made directly to Hiner Church of the Brethren, 6527 Highland Turnpike, McDowell, Va. 24458.
“We’ve had two really nice donations already,” Patsy Varner said this week. “I feel like we can make this happen and she’ll get her surgery. I am feeling hopeful.”
Erik and Abigail plan to do whatever they can to raise the money. “At least we feel like we’re doing something,” he said. “We can’t just wait.”