Toddler with spina bifida meets Paralympian: ‘She has crutches like me’

April 22, 2021  //  FOUND IN: News,

Two-and-a-half-year-old Myah Schneider’s wide blue eyes stayed glued to the TV as she watched Toyota’s Super Bowl commercial featuring Paralympic champion Jessica Long.

Scenes flashed between a little girl representing Long, a double amputee, walking with crutches and the 13-time gold medalist in present day gliding through the pool.

“She has crutches like me!” Myah exclaimed excitedly, crawling to grab her own pair of red forearm crutches and standing up in front of the screen. “I want to be like that girl.”

Her mom, Lisa, posted a photo of her daughter’s reaction to the commercial on social media not knowing that an hour later it would make national news and reach athletes around the world, including Long herself. Nor did she expect it to lead to Myah ultimately meeting the legendary Paralympic swimmer.

“I just wanted to thank Jessica for sharing her story and for being an inspiration,” Lisa said. “Representation matters. People don’t realize how much it means to a child like ours to see someone she can relate to on TV.

“It shows her she’s not alone and that she can dream whatever she wants to dream. It tells her that even though she has these challenges and may need to push harder to overcome them, with dedication and hard work, nothing is out of reach.”

Myah, almost three, is an inspiration in her own right. She was still in the womb when she underwent fetal surgery at Michigan Medicine to repair an incomplete closure in her spine known as spina bifida. But her journey into the world became life-threatening when the family was later hit with an unrelated complication during the 26th week of Lisa’s pregnancy: Myah’s umbilical cord had wrapped around her arm, cutting off her circulation.

She was delivered less than 20 minutes later at two pounds, two ounces through in an emergency cesarean by Michigan maternal fetal medicine teams.

“She’s our little miracle,” Lisa said.

Today, the blonde, curly-haired “chatterbox” who loves Disney princesses and cracking jokes, continues to make great strides in passing physical milestones, including recently taking more than 30 steps without any assistance.

And she has also garnered media fame after the picture of her reaction to the Toyota commercial went viral, re-shared by the Paralympics, Toyota, and major news outlets along with Long and other Paralympians.

“They were telling me that this was why they do what they do, so they can inspire kids like Myah,” said Lisa, of Westphalia, Michigan.   

And then Lisa got a surprise call from Toyota: they wanted to arrange for Myah to meet her icon.

‘We could’ve lost her’

Among those who Lisa immediately shared the inspiring story with was the doctor who she said “saved Myah’s life.”

“I teared up. It was so beautiful. The inspiration that Jessica offers to Myah and other kids who utilize assistive devices to walk is truly a gift,” said Marjorie Treadwell, M.D., director of Michigan Medicine’s Fetal Diagnosis and Treatment Center and the doctor who delivered Myah.

“I am blessed to be able to be a small part of the journey for many families whose pregnancy journey is nothing like what they had anticipated,” she added. “Seeing Myah, as well as so many of the other kids and families we care for, is rewarding beyond words.”

Treadwell, a high-risk maternal fetal medicine physician at Von Voigtlander Women’s Hospital and C.S. Mott Children’s Hospital, met Lisa and husband Aaron Schneider in 2018. It was a week after the couple’s 20-week ultrasound at a local provider suggested abnormalities in the fetus, ultimately leading to a referral to Michigan Medicine.

At Michigan, further scans confirmed that their baby had spina bifida, which meant the backbone and spinal cord didn’t fuse properly, leaving an incomplete closure. The condition is associated with long-term disability, including bowel and bladder dysfunction and the possibility of not being able to walk independently.

Among the options was a specialized fetal surgery to repair the defect in utero, which studies suggest may improve long-term outcomes.

“It was devastating. Until then we didn’t even know what spina bifida was. And then as we were reeling from the diagnosis, we found out we had this quick turnaround time to do an intense surgery while she was still in the womb,” Lisa remembered. “We wanted to give her the best chance possible, but it was also terrifying.”

Four weeks later, they came back for the fetal surgery, which involved a highly trained team of Michigan Medicine maternal fetal medicine physicians, pediatric surgeons, neurosurgeons, pediatric cardiologists, anesthesiologists and nurses.

The procedure requires doctors to reach into the abdomen to gently bring the fetus up to the incision without actually removing it from the uterus. Surgeons then carefully repair the defect in the fetus’ tiny spine. After being returned back inside the uterus, the fetus continues developing.

For Lisa, it meant a weeklong recovery at the hospital before being sent home. But when she came back a week later for a follow-up, care teams were concerned by the fetus’ low heartbeat.

The ultrasound showed the umbilical cord was wrapped around the baby’s arm which teams seem to have caught in real time.

“If we hadn’t already been there that day for an appointment, we could’ve lost her,” Lisa said.

Lisa was rushed to the OR and Myah was delivered minutes later.

“The team was amazing in the efficiency we were able to get back to the operating room,” Treadwell remembered. “It was minutes from when we realized the fetal heart tones were not improving. We checked heart tones again in the operating room and they were getting worse. We knew we needed to deliver even though she was still so early in gestation.”

Lisa says the family likes to tell Myah that she was just antsy.

“We tell people she got a sneak peek of the outside world during fetal surgery and was just impatient to come out,” she said.

Myah spent more than 70 days in the Newborn Intensive Care Unit at Mott before going home for the first time.

“The doctors are more like family now than medical professionals,” Lisa said. “Dr. Treadwell and her team literally saved Myah’s life and there are no words to express how thankful we are.”

Treasuring milestones

Myah, who has other complications associated with spina bifida, continues to get stronger through physical rehabilitation. She’s taking more independent steps every week and just walked in a full circle for the first time without assistance the type of progress doctors believe is likely possible due to her fetal surgery.

“When you have a child with a physical disability, you don’t take any milestones for granted,” Lisa said. “Those moments are better than anything you could dream of.”

“Myah is just the happiest little girl and brings so much joy to everyone.”

And the toddler is enjoying her days playing with her three older brothers, Trey, 8, Lane, 6, and Jase, 5, while “having everyone wrapped around her finger as the only girl in the family,” her mom said.

“Our last couple weeks have been crazy and incredible,” said Lisa who recorded the Zoom chat with Long for Myah to re-watch when she’s older.

“It’s been wonderful seeing so many people spread the message about how much representation matters and heartwarming to see how much Myah has impacted others.”  

This story first appeared on the Michigan Health blog.