Despite puzzling hip dysplasia diagnosis, Colo. girl continues to beat the odds

EATON, Colo. — It’s a typical summer for 10-year-old Alexis Swain and her 8-year-old brother, Daniel. Their days are jam-packed with camps, time with friends and family and hours spent running around the backyard with the chickens. They’re also very active with the Boys & Girls Club.

“We mostly just do random things,” said Alexis. “Like one day we might do a cooking class or another day we might do a big craft.”

It’s a normal life now but Alexis has only recently come to enjoy it without pain.

Swain Family

“So, her story goes back to probably when she was about 14 months old,” said Alexis’ mom, Mary Swain. “We noticed some differences with her development, gross motor development, and her walking.”

“Mary was pregnant (with Daniel), and I always thought that Alexis was just mimicking how Mary was walking,” said Clint Swain, Alexis’ dad.

At first, doctors were perplexed. Traditional tests turned up nothing too alarming.

“So, we kept her in physical therapy until age five,” Clint said.

Additional tests came back negative.

“We were relieved but still without answers,” said Mary.

Doctors across multiple disciplines somehow missed perhaps the most important test for Alexis.

“She got missed by orthopedics,” Mary said. “So nobody ever thought to take an X-ray of her pelvis.”

Swain Family

One fateful day, 6-year-old Alexis was shopping with her mom and brother for camping gear when everything changed.

“The kids were horsing around in the aisle and Daniel sat on her,” Mary said. “And it was either that night or the next, I don't recall when, but she could not get off the couch. She couldn’t walk.”

The Swains rushed her to the doctor.

“So the first X-ray came up — and I work in health care — and I looked at it and I was like, ‘Oh my gosh,’” Mary said. “Both femurs were completely, severely dislocated from the socket, and that's how they developed.”

Alexis received an extremely rare late diagnosis of severe hip dysplasia. According to the Mayo Clinic , hip dysplasia occurs when a hip socket does not fully cover the ball portion of the upper thighbone, allowing the hip joint to become partially or completely dislocated. Most people with hip dysplasia are born with the condition, according to the Mayo Clinic.

“It’s very rare. From other medical professionals that I've talked to, they say this doesn't happen in a third-world country,” said Mary.

Swain Family

“It occurs in about one in 1,000 babies that are born,” said Dr. Courtney Selberg, an orthopedic surgeon with a hip preservation specialty at Children’s Hospital Colorado. “And much rarer for it to be diagnosed at this age.”

According to Selberg, hip dysplasia is typically diagnosed at a very young age.

“I met Alexis and her family right after their diagnosis of hip dysplasia,” Selberg said. “And she was 6 years old.”

Surgery at that age would be risky, but Selberg believed it could be done.

“Being able to reconstruct the socket and that hip joint really did take quite a bit of planning,” said Selberg.

“One of the cool things that Dr. Selberg did that just still blows me away, they made a 3D print of her hips and how everything was set up,” Clint said. “And Dr. Selberg actually over the 4 ^th of July weekend prior to the surgery, did the surgery on the 3D model.”

The surgery took nearly 11 hours and recovery in the hospital took even longer. During that time, a group of family and friends decided to help out the Swains.

“When (Mary) told me about the surgery options, I just remember the impossibilities of it but knowing that we would get through it,” said Mary’s sister, Heather Bledsoe.

“We were talking about, you know, Alexis being in a cast over the summer, just how miserable and hot it would be. And everybody just felt so bad,” said Chris Novak, a friend of the Swains.

Heather and Chris organized an army of friends and family to help build wheelchair ramps and make other home modifications to make the Swain home more accessible.

Swain Family

“Heather got a lot of the family involved,” Chris said. “Then I just went to the garage, I grabbed my tools, and I showed up. We cut a hole in the wall, we pulled the door, patched in the door, reframed it, drywalled it, kind of came out here and helped with the steps, and just kept bouncing around with whatever was needed to be comfortable for them.”

“It was one of those moments that you just know that God's real,” Heather said. “Because we started a GoFundMe and we raised, I think, $10,000 or close to it.”

“And our friends even thought about extras,” Mary said. “They redid Daniel's bedroom so he could feel like he got an upgrade out of the situation, too.”

Fast forward to today, and the Swain kids are two very busy siblings.

“It’s good to see her just being a kid,” Heather said of her niece. “I’m amazed every time I see her.”

“She should have never walked to start with because there was nothing there to support her,” Mary said. “I don't blame it on anybody. I want to make it right in the future. I want to make sure that other kids don't end up in this situation.”

Swain Family

“I've been so impressed with how Alexis has really managed,” Selberg said. “It's a multi-year, very long process of recovery and really learning how to walk again. And she has impressed our whole team with how tough and resilient she is and really what a bright, amazing attitude she's had throughout this whole process.”

Dr. Selberg will be riding in the Courage Classic at Copper Mountain this weekend in honor of Alexis, one of dozens of "patient champions." The Courage Classic honors dozens of patients every year.

The two-day annual bicycle event is the largest fundraiser of the year for children across all specialties at Children’s Hospital Colorado. It begins on Saturday, July 20 at 8 a.m.

Click here for more information on how to watch the race, the race route, and how you can support the riders with a donation.

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