Even before she was born five weeks early, doctors didn’t expect Mia Wilson to live.
Not a year or a month or a day.
At week 30 of her pregnancy, Wendy Wilson was told told her unborn child’s chances were slim — 10% — and it wasn’t likely she’d survive to birth.
Her malformed heart couldn’t keep her alive, doctors said.
But Mia did survive, and one year became another and, then, another.
On Feb. 19, Mia and her family celebrated her 11th birthday in their winter home of Florida, on the tropical waters Mia has come to love.
“Anything water-related — swimming, boating,” her mother said. “She loves to be on the water.”
So when summer wanes and winter nears, the New Franklin family heads south and settles into their boat moored in the Sunshine State.
‘We found something wrong’
Early on, everything seemed normal in Wilson’s pregnancy. The baby would be the latest addition to the family for her and her husband, Bobby, and their three daughters.
During a visit to the doctor at the 30th week of the pregnancy, a concern that had appeared in the 20-week ultrasound was resolved.
But the sonographer noticed something else — something far more serious and devastating.
“She started checking and then she left the room,” Wendy Wilson said. “[She] came back and left the room again.”
The expectant mom was told the doctor wanted to speak with her.
“We found something wrong with the heart,” Wilson said she was told. “I honestly thought everything was going to be fine, but as we were leaving the midwife came out and said... ‘I'm so sorry.’ ”
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Two days later, a visit to a pediatric heart specialist confirmed the terrifying news.
“The prognosis is very poor,” the parents were told. “We don't have a lot of history with what is wrong with her. If she makes it long enough to be born, she has a 10% chance of surviving.”
Mia was filling up with fluid from heart failure. She had Ebstein's anomaly, a rare malformation of a heart valve.
Her parents were told to plan for a funeral.
‘Why is this happening?’
Wendy Wilson was admitted to the hospital soon after the visit to the cardiologist and spent a month there — a month not knowing if she would have a baby to take home.
“I was laying there praying and talking with all the doctors,” she said.
The Wilsons contacted other hospitals, seeking hope that something could be done for their unborn child. They were offered none.
“Basically, nobody would take her,” Wendy Wilson said.
At 35 weeks, she was told the birth could wait no longer.
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“The day she was born ... they came in and said she wasn't doing good,” she said. “I needed to go to operating room and she needed to be delivered right away.”
Bobby Wilson wasn’t at the hospital and she thought he wouldn’t get to witness the birth. He might never get to see his daughter alive.
But he had had a sense he should go see his wife quickly.
“[H]e walked into the room,” she said. “He called his mom and had his mom watch the kids. He got there in time.”
Two teams were ready: one for mom and one for the baby.
“Even though I knew it was bad, I was angry, at first, with God,” she said. “Why is this happening?”
The Wilsons were told Mia’s team would whisk her away and try for 20 minutes to resuscitate her. Wendy Wilson waited as the minutes ticked by.
“In the operating room, I could see the clock on the wall while I was laying on the operating table,” she said. “At 20 minutes, I was trying to sit up.”
With her husband at her side, she looked as a nurse in the resuscitation room held up Mia.
“They lifted her up and she was gray,” she said.
But they were putting in an IV, and she knew that was a good sign.
“They brought her in for, maybe, two minutes,” she said.
Mia had survived the birth, but there was little hope for her future. She was taken to Akron Children’s Hospital for palliative care.
“They were helping us make hand prints and little pictures with us,” her mother said.
The Wilsons were told Mia would probably not make it through the night.
But she did. One day, and then another. Every day, the Wilsons were told it might be the last.
“Can you please stop coming in here telling us that?” Wendy Wilson told a doctor.
The hospital investigated the possibility of a heart transplant, but that was a longshot.
“They did not think she was going to survive long enough for a transplant,” her mother said.
There was something else they could try, the Wilsons were told. It wouldn’t fix Mia’s condition, but it could alleviate some of the severity of her problems and give the family a little time with her. A Michigan hospital, the C.S. Mott Children’s Hospital in Ann Arbor, had dealt with similar issues before.
“They perform a series of heart surgeries where you can buy time,” the Wilsons were told.
Akron Children’s sent Mia’s information to Mott Children’s.
“They said they would take her,” Wendy Wilson said. “At day seven, she got Life-Flighted there.”
In Michigan, Mia and her parents met Dr. Martin Bocks, a specialist in pediatric catheterization who has remained on Mia’s case since then. He later relocated to University Hospitals' Rainbow Babies & Children’s Hospital, where he is developing a bioresorbable stent for young children.
“Her prognosis early on was really quite poor,” Bocks said. “.. One of the most severe congenital heart cases I’ve seen.”
Mia spent her first 11 months at Mott Children’s as surgeries were performed to improve her condition. Bocks placed stents in her arteries to improve blood flow.
“In Mia’s case, she ended up having two stents that were put in to open up pulmonary arteries,” Bocks said. “Those are metal stents that will stay in the rest of her life.”
He is developing a zinc alloy-based stent that will be absorbed by the body and allow the arteries to expand as a child grows into an adult. The stents would cut down on the number of surgeries a child like Mia would have to endure.
Every year, the Wilsons raise funds to support Bocks’ research, hoping the stents can help other children with heart conditions.
“That's why we're doing the fundraising,” Wendy Wilson said. “He needs money to get to the point where it gets to the FDA.”
A birthday for Mia
Mia’s time in Ann Arbor was full of improvements and setbacks as she fought to make progress.
“[She] had multiple cardiac arrests, infections, surgeries...” her mother said. “They sent us home [because] we wanted to at least have a little bit of time at home with her. We didn't think in a million years that she would be alive at 11.”
Her family celebrated Mia’s first birthday at a party at Dietz’s Landing in New Franklin. She hadn’t yet taken her first steps and couldn’t eat her any of her Winnie the Pooh birthday cakes – she is fitted with a feeding tube – but she had survived 12 months of adversity few others could have endured. Seven times in her first year, she’d had a release date that was delayed.
“It was a long time coming. Sometimes we never thought it was going to happen,” Bobby Wilson told a Beacon Journal writer at the time.
Mia has developed into a happy child and her family has learned to appreciate every day they are together, Wendy Wilson said.
Birthday after birthday have come and gone, and Mia prevails.
She’s had and will always have medical challenges to overcome, her mother said.
“She knows her heart doesn't work right. She has a feeding pump, and she knows she is sick,” she said. “A lot of time, she just doesn't feel good. ...She's had several strokes since she was a baby.”
She takes 40 medications a day and is on oxygen at night.
“We're constantly monitoring,” Wendy Wilson said. “We have her on a roll-out mattress by our bed.”
Mia’s health troubles don’t keep her from enjoying her life, her mother said.
“She will just go up and become someone's best friend in 30 minutes,” she said.
Bocks, who has known Mia since she was a week old, said she has a positive effect on everyone she meets.
“I think the most remarkable thing is Mia’s spirit,” he said. “There’s not any person I’ve met who hasn’t been touched by her spirit.”
'I will never forget it'
Wendy Wilson said she treats every day as a gift and relies on her faith for strength.
“I finally got to the point [that] God is good no matter what,” she said. “Whether she lives or whether she dies, He is still good. You can't bargain with God.”
Mia’s sisters, too, have had to adjust their lifestyles to align with the youngest member of the family.
“When you have a child that has these critical health issues it doesn't just affect the child and parents — it affects the whole family,” Wendy Wilson said. “The siblings are the unsung heroes in these families that have somebody with a critical illness. They have to give up a lot in order for that child to be taken care of.”
They’ve done so without complaint, she said.
It’s still possible Mia could one day receive a heart transplant, but her heart would have to falter before her other organs.
“There's a point where you're too sick for a transplant," her mother said.
That point could come at any time or not come at all, Wendy Wilson said. Mia's kidney and liver functions could deteriorate or the lung and intestinal issues she also faces could cause a crisis that would make her ineligible for a transplant.
“Each year, we hope for no change. The best we can hope for is no change,” Wendy Wilson said.
In May, the Wilsons will return to New Franklin, always hoping for another birthday to celebrate in Florida with Mia. They hope her story can help other families who face similar obstacles.
“It's about raising awareness for congenital heart defects,” Wendy Wilson said. “That first year — it was so horrific. Thank God that Mia will never remember the first year, but I will never forget it.”
Leave a message for Alan Ashworth at 330-996-3859 or email him at firstname.lastname@example.org. Follow him on Twitter at @newsalanbeaconj.
To make a donation in support of Dr. Martin Bocks' bioresorbable device research, go to https://bit.ly/3vnRX6k.
This article originally appeared on Akron Beacon Journal: New Franklin girl beats medical odds, survives severe heart condition