Ayden Gendreau of Camanche, Iowa was born 13 years ago with a heart defect. With some expert care and compassion from University of Iowa Stead Family Children’s Hospital, his heart certainly isn’t defective any longer.
In honor of Ayden’s tenacity, resilience, strength — and lots of heart — he’s been named Kid Captain by the University of Iowa football team, and will attend the Homecoming Game this Saturday, Oct. 16, for free with his family. They got six free tickets to the game (against Purdue), and will meet the Hawkeye players and coaches ahead of time, and walk out the tunnel. Ayden also might get to be on the field for the coin toss, his mother Patsy said Tuesday.
They will leave a special T-shirt on an empty seat for her late husband Ryan, in his memory. Ryan, then 35, was killed Oct. 20, 2013 in a motorcycle accident, after being struck by a car in Arkansas. Patsy (a paraeducator at Camanche Elementary School) also has a 10-year-old daughter, Michaela.
Ayden was born Oct. 2, 2008, and his doctors soon detected a heart defect. He was airlifted to University of Iowa Stead Family Children’s Hospital the day after he was born.
“I was terrified for my day-old son, but when the AirCare team showed up, they were there not only to prep Ayden, but to help Ryan and myself understand what was happening,” Ayden’s mother, Patsy, recalled. “They knew we were frightened and answered all our questions the best they could.”
After many tests, Ayden was diagnosed with VACTERL syndrome, a rare association of birth defects that affects multiple parts of the body, with each letter representing a different abnormality. In Ayden’s case, that included vertebral abnormalities and anal and cardiac defects. The exact cause is unknown.
Ayden’s first surgery was for a colostomy bag when he was just a week old.
Hospital staff is “amazing”
“When the surgeon came out after surgery to tell us how Ayden was doing, he looks at me and he goes, ‘How’s Mom doing?’” Patsy remembered. “They’re amazing. They make sure the patient’s taken care of, and they make sure the family’s taken care of.”
At just 22 days old, Ayden had a hybrid surgery to correct transposition of the great arteries, a condition in which the two main arteries leaving the heart are reversed, as well as an atrial septal defect – a hole in the wall between the heart’s two upper chambers – and ventricular septal defect, a hole in the wall between the two lower chambers.
Further surgeries followed, with rods installed in Ayden’s back beginning when he was 2, to correct scoliosis.
He needed surgery every six months to extend the rods until he was 6, when Patsy learned Ayden could have access to cutting-edge technology with “MAGEC rods,” which can be lengthened using powerful magnets, allowing a child to grow without repeated surgeries, according to the children’s hospital.
Ayden was just 5 when his father was killed in the motorcycle accident, during an annual trip with Ryan’s friends.
“Ayden will talk about him because they used to be buddies. Ryan would take him to preschool every morning,” Patsy said. “I think it kind of caused him to grow up faster. He had a surgery just a few months after Ryan passed, and I remember him looking at me and saying, ‘Don’t worry mom, I’m going to be brave for you. I got this, I’m going to be brave.’
“Whenever he meets someone or sees his friends or his family, he’s got to go up and give them a hug,” Patsy said. “He likes to make everybody feel like they matter.”
Ayden has had back surgery every six months to lengthen the rods, before the magnets were available. He has to have his last major back surgery in December.
Patsy has taught in school for five years, and before that she worked for U.S. Cellular. They haven’t had to do fundraisers to cover their huge medical costs.
“Luckily, we’ve had decent insurance where I haven’t had to do that,” she said. “It’s been a blessing.”
Daughter Michaela has been very supportive of Ayden. “I think with this next surgery coming up, I think she’ll be waiting on him hand and foot. She’s a little mother hen to him,” Patsy said.
Ayden shows resilience
Ayden has been very strong and resilient through his road to recovery.
“He’s always had a big heart, especially since his dad passed away,” Patsy said. “He’s been very protective of me. So I think he does whatever he can to keep me calm. He likes to make sure that I’m happy.
“He was always pushing himself to the limits,” she said. “Even like after one of those first heart surgeries, he had pain medicine that you’re supposed to take for, like two weeks. And I think after the second day, he was like, I don’t need it anymore. I don’t want it, it’s gross.
“Really? Are you sure? Finally, we could convince him just to take a little bit before we’d go to bed, just to help him sleep,” Patsy said. “He’s been kind of stubborn when it comes to, even with his heart surgery, they told him we were going to be in the hospital for six weeks afterwards, if that’s typical. And I think we were out in two. So he’s always been pretty resilient.”
They have T-shirts, with a logo “Enjoy the Ride, Live Like Ryan,” that Ryan’s cousin had made for a benefit and celebration of life in June 2014. They also have passed out “Pay It Forward” cards they give out in his honor.
“Because Ryan would give you the shirt off his back,” Patsy said. “We hand them out throughout the year – different things you can do to pay it forward. It doesn’t have to be monetary or whatever.”
She sees a lot of Ryan in Ayden. “He’s got his dad’s big heart,” Patsy said. “He wears his emotions on his sleeve, which is sometimes good or bad. It makes it a little easier to read him. And he’s very smart like his dad. It’s not that I’m not, but his dad was very intelligent and I see the way his mind works.”
The Kid Captain tradition
This year’s Kid Captains were selected for the 2020 season, which was later canceled due to the COVID-19 pandemic. Hospital administrators and infectious disease experts are monitoring Iowa’s COVID status and may make adjustments to the program, as needed.
This year’s Kid Captains were chosen from 257 nominations from three states for the program.
“We know these kids have all waited a long time for this day, and we’re excited to be able to share their incredible stories of courage,” said Pam Johnson-Carlson, chief administrative officer of UI Stead Family Children’s Hospital. “It has been a true honor to be able to care for them all on their health care journey. We congratulate all of them on their selection to this year’s Kid Captain team.”
For Kid Captain, parents can nominate their kids, and Patsy has done it for several years.
“They gave me a phone call; actually it was 2020 when he was nominated but with Covid, it was postponed a year, so we had to keep it quiet for a year, which was hard,” she said Tuesday. “They gave us a call from the hospital and I was pretty shocked. I didn’t expect him to get it, but I was tickled.”
They choose one child per game; there are 12 games in the regular season and seven home games. All 12 were invited to Kinnick Stadium on Aug. 14, 2021, for a behind-the-scenes tour. Ayden has never been to an Iowa game in person, though he attended a fundraiser with Ryan many years ago at Kinnick (not during a regular game), in the press box.
They usually would watch Hawkeye football games on TV every Saturday. Ayden has been more into playing baseball, since 1st grade, because of his physical limitations, Patsy said. She watched the big Hawks’ big win over Penn State last weekend, but Ayden was at a friend’s house that day.
“When Ayden was first in the hospital, they played Penn State and won under the wire, too,” she said. “I remember Ryan and I watched the game and you could hear the crowd from Kinnick in the hospital room; it was so amazing. I imagine it was like that for the people there this past Saturday night too.”
Dramatic wins over Penn State
On Nov. 8, 2008, Iowa beat then-No. 3 Penn State 24-23, with a dramatic 31-yard field goal with one second left on the clock. The Hawkeyes won Oct. 9, 2021 at home, as #3 Iowa sunk #4 Penn State 23-20. It was Iowa’s fifth win over a top-5 opponent in its last six matchups inside Kinnick and Iowa’s second win over a top-10 team this season
Now the Hawkeyes (6-0) are ranked #2 nationally, the highest AP ranking Iowa has achieved since the historic 1985 season, when they finished 10-2. Iowa has been in the top-2 nationally just four times before this season with three of those peaking at #1 in the AP. Only the 1961 season, in which Iowa entered the year ranked #1, saw the Hawkeyes finish outside the top-10 in the nation. Iowa won the national championship in 1958, when they finished 2nd in the AP.
Ayden’s health will continue to be monitored, and Patsy is grateful for his ongoing care at UI Stead Family Children’s Hospital.
“From the custodial staff to the surgeons, everyone is so accommodating and caring,” she said. “The entire staff treats you with respect and they treat your child as if they are their own. I wouldn’t want my son to go anywhere else.”
To learn more about Ayden, visit uichildrens.org/2021-Ayden.