New baby and mom’s double lung transplant
One of the first questions Stephanie Stroh asked after her double lung transplant was, “Did we win?”
That was April 30, and she was talking about the St. Louis Blues. Her beloved hockey team had played the Dallas Stars the night before and won, moving one step closer to the Western Conference Finals.
That seems like ancient history now that the Blues are one game away from a possible Stanley Cup title. They play Sunday night in Game 6, leading 3 games to 2.
But at the time, it gave Stephanie, 30, an opportunity to do what she does best: Divert attention away from her own health problems and make everyone else feel better.
“She’s so humble, and she has such a good attitude,” said her husband, Alex Stroh, 32, of rural O’Fallon.
Alex was happy about the Blues win against the Stars, too. He had watched the game in the Barnes-Jewish Hospital waiting room in St. Louis while Stephanie was in surgery.
But his main concern was his wife’s well-being and making sure their daughter, Delaney Stroh, now 3 months old, would have a mother to love and care for her.
Stephanie was born with cystic fibrosis, a genetic disease that causes mucus to build up in airways and limits the ability to breathe. Drugs and nebulizer treatments had allowed her to live a relatively normal life. She worked as a dental assistant at Howenstein Dental in Fairview Heights and participated in many CF fundraisers.
But Stephanie’s lungs deteriorated dramatically during her pregnancy.
“The way the doctor stated it was, ‘If you want to see Delaney’s first birthday, you need to (get a transplant),’” said Alex, a mechanic for Dobbs Tire & Auto Center in Shiloh.
‘One miracle after another’
The Strohs don’t know who donated lungs to Stephanie, what happened to the donor or why the lungs became available five days after she put her name on the transplant list April 24. They had expected to wait months or even years.
Today, Stephanie is sore from her incisions, but she’s walking and doing other light exercise to build up strength. Her weight-lifting restrictions may be reduced on June 10, allowing her to pick up the baby. Delaney is doing well, despite being born six weeks premature. She has tested negative for cystic fibrosis.
Stephanie’s body has shown signs of transplant rejection, but doctors believe that can be controlled with medication. As always, she remains positive.
“I have a beautiful baby girl,” she said, flashing a bright smile. “It’s like one miracle after another, the fact that I’m here and (Delaney’s) healthy.”
In recent months, both sides of the family have pitched in to help the couple with their daily challenges. They’re all die-hard Blues fans, so they recognize the irony: Their team is getting its first shot at a Stanley Cup title in 49 years at the same time a loved one is fighting for her life.
They all watched Thursday night, when the Blues beat the Boston Bruins, pulling ahead three games to two in the Stanley Cup Finals. Four games are needed to win the series, which resumes Sunday night.
The Strohs’ spirits are high — with a caveat.
“We all love the Blues,” said Alex’s cousin, Rob Stroh, 50, of O’Fallon, a vice president at Tempo Bank in Trenton. “But here’s a family member, a loved one, who could have died. It’s a unique situation.”
Blue blood in both families
Stephanie’s parents, Vernon and Debbie Dulaney, owned Funtown U.S.A. roller-skating rink in Granite City before it closed four years ago. But they also love ice skating and hockey.
Alex’s father, Paul Stroh, got hooked on hockey as a boy in 1967, when the Blues were founded as an expansion team. He and his friends bought hockey sticks and played in fields at O’Fallon Community Park or at roller rinks until ice rinks began popping up. In the mid-1970s, they joined a league.
“We played at midnight (at Granite City Ice Rink),” said Paul, 63, of O’Fallon, co-owner of Lucky Dog Barks and Recreation in Swansea. “That was the only time we could get ice time.”
Paul had Blues season tickets from 1975 to 1981, when people dressed up for games, including men in suits and ties. He passed his love of hockey onto his four children, Alex, Adam, Julie and John, and his nephew, Rob.
Rob has been a Blues season ticket-holder for 28 years. He remembers taking off work for “tag day” in 1991 and driving to the old St. Louis Arena with a friend.
“We were like 15th in line,” said Rob, now a vice president at Tempo Bank in Trenton. “When they let us in, we both went in different directions, and we picked the best seats we could find — in our price range.”
Rob can’t ever remember going to hockey games in June, but that’s what he’s been doing with his fiancee, Mo Wilkerson.
Lifetime of breathing issues
Stephanie was diagnosed with cystic fibrosis as a baby, but her parents insisted she never miss a breathing treatment growing up, and that has worked in her favor.
As a teenager and adult, Stephanie was determined to live her life to the fullest. At one point, she even competed with the Arch Rival Roller Derby team in St. Louis.
“If you didn’t know that she was going to have to go and do her treatments, you’d never even know she was sick,” father-in-law Paul said.
Alex and Stephanie met at O’Fallon Township High School. He was aware of her health problems from the start. They were dating when her 21-year-old sister, Bridget Dulaney, died in 2008.
Bridget also had cystic fibrosis, but her case was more severe and her lung function much lower.
“When (Stephanie) was born, the life expectancy for CF patients was 18, and now it’s in the low 40s,” Alex said. “There have been a lot of advances in medicine.”
The couple got married nearly 11 years ago. Stephanie tried to get pregnant, but it never happened.
Last spring, Stephanie joined a medical study at Washington University that required her to sign a contract, promising to practice birth control. Doctors didn’t know how an experimental drug could affect a fetus. But as luck would have it, she got pregnant, giving the family mixed feelings.
“We were excited for them, but we were worried about Stephanie,” said Paul’s wife, Gina Stroh, 58. “We were like, ‘Is she going to be OK?’”
Pregnancy proved too much
The family’s concern was soon validated. The pregnancy caused Stephanie’s breathing problems to worsen, and she spent three days in the hospital in mid-February. Doctors induced labor on March 6, six weeks before her due date, and performed an emergency C-section the following day.
Baby Delaney weighed 5 pounds, 3 ounces.
“She was a premie and came out completely healthy,” Stephanie said. “They didn’t even have to put her on oxygen. They were worried about her eating, but she’s the best eater in the world. She’s a little superhero.”
The Strohs thought Stephanie’s lung function would return to normal after the baby was born, but that didn’t happen. The pregnancy had caused the lower part of her lungs to collapse. She developed pneumonia, landed in the intensive-care unit and couldn’t see Delaney for four days.
At one point, Stephanie’s blood pressure was so low, the family didn’t know if she would make it.
“Her pulmonary doctor actually met me in the hallway with tears in his eyes,” Alex said. “I don’t even know what he said.”
Somehow Stephanie pulled through. She went home with an oxygen tank, but ended up back in the hospital on a non-invasive ventilator. She sensed her time was limited and wrote a letter to family members that read, “Let everyone know how much I love them!!”
Stephanie had always been against the idea of a lung transplant, thinking it meant trading one set of medical problems for another. But Alex knew it could be her only hope.
“I figured baby Delaney needed a mother, so I told them to push forward with the evaluation,” he said.
Stephanie had returned to the hospital for the fourth time when the call came on April 29 that donor lungs were available. The surgery lasted from 6:45 p.m. to 2:30 the next morning.
Stephanie gives her husband credit for standing by her, taking care of her and urging her to go forward with the transplant.
“I wouldn’t be alive today if it wasn’t for him,” she said. “Especially in the last couple of months, he’s been my rock.”
How to help the family
Today, the Strohs and Dulaneys have high praise for the Barnes-Jewish Hospital staff and anyone who signs up for organ donation. They’re also trying to raise awareness of cystic fibrosis and encouraging people to do what they can to help improve treatment options or find a cure.
The family has planned a fundraiser for Alex and Stephanie to help with medical expenses not covered by insurance and to make up for the months of work that both have missed this year.
A bags tournament will be held at noon Aug. 17 at The Hut Sports Bar & Grill in O’Fallon. The event will include a silent auction and other activities. More information is available at #StrohStrong Bags Tournament on Facebook. People also can donate to Tempo Bank, C/O StrohStrong, P.O. Box 59, Trenton, IL, 62293.