Macie’s Milestones

Macie Leiphart in her first stander.From the start, Macie Leiphart set her own timetable.

She arrived in the world two months before her due date.

She didn’t sit up on her own until she was 2 years old.

At 3, she decided to crawl.

And walking, well, that’s what this story is all about, along with a surprise for a CHKD surgeon who believed he could make Macie’s life better.

But first, here’s why Macie’s milestones are different from most kids.

Macie was born at 32 weeks gestation in an emergency cesarean section, because her mother, Laura, couldn’t feel her moving, and doctors could tell Macie was in distress. During birth, Macie lost 70 percent of her blood because of a condition called “fetomaternal hemorrhage,” in which blood flows from the fetus into the mother’s blood.

Macie didn’t meet any of her early developmental milestones. Before she was discharged from the NICU, a scan showed damage to the left side of her brain. That led to a diagnosis when she was 6 months old of cerebral palsy, which are disorders that impair the ability to move and maintain balance, and sometimes, cognitive development.

Since the time Macie was 2 months old, she’s been in therapy and treatment of one sort or another at CHKD, to help do things many kids and their parents take for granted. She’s had physical therapy, surgeries, and a wide array of technology to help her.

And she also had this: A fiercely independent spirit.

“If a child is going to do something, it’s at their own pace,” said her mom, Laura Leiphart of Virginia Beach. “She’s always met her milestones in her own unique way. Even if she has to do it differently, she’s going to do it.”

When she was 3 years old, she received her first stander, which helps her stand up to improve her overall health and to practice bearing weight. When she outgrew that one, she received another at 7, so she could see things from a standing position, and stand at the counter and help her mother cook and do projects.

Since Macie doesn’t walk, or bear as much weight by standing as other children, her hips started to move out of their proper position, with the ball portion of her upper thighbone moving out of the sockets, causing her pain.

CHKD orthopedic surgeon Dr. Carl St. Remy said a surgery called “bilateral hip and pelvic osteotomy” could help ease pain and allow her to be more active. But the procedure would be intense and recovery painful as it would involve cutting and reshaping the bone to create a better shaped cup to hold the ball of the femur. Dr. St. Remy, chief of orthopedics and sports medicine at CHKD, said if all went smoothly, her hip joints would be more stable, allowing her to move more easily.

“His bedside manner is amazing, he’s just the best. He’s pushed her and helped her live the best life she can,” Laura said.

In February of 2019, Dr. St. Remy performed the surgery. Macie, 6 at the time, couldn’t understand why she was in so much pain afterwards and had a hard time expressing it to her mother. She didn’t sleep, and sometimes she simply wept in pain and confusion.

As Laura puts it, “This is when Dr. St. Remy and I became best friends.” She said he went out of his way to see Macie whenever needed, making sure she had proper pain medications and scans to ensure that healing was taking place. “Once, he was walking into his office and saw me pull into the parking lot. He came over and helped me get Macie out of the car and into the building.”

Macie Leiphart in her second stander.The next months were difficult as physical therapists from CHKD helped Macie regain all she had lost. She had to learn to crawl again, starting with aqua therapy to get her limbs loosened up.

Breanne Mitcham, a physical therapist at the CHKD Health Center in Virginia Beach, said she and other therapists worked with Macie to start stretching her muscles and gradually increase weight-bearing activities, like crawling.

Then they worked with her on transferring out of her wheelchair and pulling herself up to a standing position. They tried various assistive devices, called “gait trainers,” moving from one that provided a lot of support to the one she uses now on her own.

In February 2020, X-rays showed her hip bones were growing extra bone – a great sign -- so Dr. St. Remy was able to remove some of the screws in February 2020.

The year 2021 brought more breakthroughs for Macie. She was able to walk using a gait trainer in a nearby park. Since then, she’s built up to walking a quarter mile. And she can do so independently, without anyone helping her.

“She’s getting stronger and stronger,” Laura said. “She can walk a quarter of a mile every other day at the park, and she loves it.”

Laura said that, for the first time, she’s at eye level with other children who are in the park.

“She loves to swing, that’s her motivator. Kids will come up and it’s so much better when she’s using the walker because she is at their level. She is standing like they are. A little change like that really helped her confidence and her demeanor.”

So, as a gesture of thanks, Laura and Macie wanted to surprise Dr. St. Remy on April 30. It would be Macie’s first appointment with him since she started walking.

With the help of office manager Sarah Hensley, Macie hid in a side room of the office, with a pink cape on the back of her gait trainer that said, “Super Macie.” When Dr. St. Remy was ready for her, she began walking down the hallway as he watched in amazement. Even with a mask on, you could see Macie was beaming.

“Oh my goodness, how are you?” said Dr. St. Remy. “You look so wonderful. That’s historic! You’re going to make me cry.” With her pink high tops and jean jacket, Macie made her way down the hallway as Laura pulled out a “Super Surgeon” cape for Dr. St. Remy.

Together they “flew” down the hallway as nurses and managers and other healthcare workers watched along the sidelines. Dr. St. Remy even broke into song: “Believe it or not, I’m walking on air, I never thought I could feel so freeee. Remember that tune? Flyin’ away on a wing and a prayer…”

A wing and a prayer and oh so much more, according to Laura: “It’s been blood, sweat, tears, surgery, and therapy to get to this point,” she said.

The transition has been a huge help for Laura, a single mother. “It’s like a breath of fresh air. It gives us hope. When you have children and they normally start walking at 1, it’s amazing. When you have a child with a disability who has to work so hard, it’s a different type of life. You see your nieces and nephews walk before her. So it’s even more amazing to see your own child walk when she does. I could shout it from the rooftops.”

Laura knows her daughter will keep at it, reaching milestones at her own pace.

“In the park, kids will walk by or run by and you can see in her eyes, she wants to be able to do that too.”