It’s been one year since the Killpack family battled their insurance company to get a very rare surgery for their unborn daughter. Millie Killpack was pregnant with her fourth child when she learned the little girl would be born with Spina Bifida. This would be their second child with the spinal disorder, so they decided to try a procedure that would fuse the baby’s back while she was still in the womb. ABC 4 Utah’s Kim Fischer checked in with the family to see how they’re doing now.
A typical day for Maggie and Matt Killpack includes hospital visits, homemade meals, and horse therapy. While the couple said it's a lot of work, the work is worth it.
"Miracles have happened in our lives and it's not something tangible just the way that our family has changed from what we've been through," Matt said.
Matt and Millie are the parents of 4 kids, ages 8, 6, 4 and 9 months. The two youngest Davey and Maggie, both have Spina Bifida. Davey has been doing horse therapy for several months to help with his balance and confidence.
"It makes him feel cool, you know he's a big kid up there riding that horse and he has a lot of power, that's a neat thing for him," matt said.
But Davey still has struggles, especially during spring and summer months when he wants to be outside playing. But his limited mobility doesn't stop him from trying.
"He crawls down the street, to the neighbor’s house and it makes me cringe and he has holes in his jeans but you just got to let him do it," Millie said.
We met the Killpacks a year ago when Millie was pregnant with Maggie.
"I look back at a year ago and it seems like a dream. I can't believe we went through with that was really hard and I think, whoa that was tough and now, it's ok, we're good," Millie said.
When the couple learned their daughter would have the same disability as their son, they looked into a surgery that would sew up her spine while still in the womb, but getting the insurance to pay was a struggle.
"We weren't expecting the media or any kind of news coverage this was just something that our little family was going through. But it was because of the news that we were able to get the surgery," Millie said.
The question Millie gets most now is, “did the surgery work?”
Millie said she simply has no answer. "We will never know, it will take years to kind of know what Maggie’s abilities are, but she can feel her toes, she has feelings all the way down to her toes which is really amazing for a Spina Bifida kids and we're grateful for that."
The family does see those small differences physically, but the surgery wasn't a cure-all.
"She still has Spina Bifida. The fetal surgery doesn't change everything, so she has health problems and struggles and concerns and we just work through those as they come along," Millie said.
Millie said the fetal surgery may not be right for every family, but they felt it was right for them. Since they made the decision, they've never looked back.
"We had the surgery and we don't think to ourselves was it worth it, is she better because of it? We just did it and moved forward," Millie said.
That resolve is one of the most inspiring things about this family. To some, Spina Bifida is seen as a crippling disability, but this family chooses to find the joy it brings.
“i think that it's brought our family closer together, and I think Maggie in a lot of ways, in every way just completes our family," matt said.
The only thing more impressive than the Killpack's resolve is their love for each other.
We also asked the Killpacks about their insurance situation right now. They said it’s “a very fluid thing.” They said the surgery is still pending a year later, but they’re just happy they were able to get the surgery for their daughter.