Blair Fehlker’s first birthday was Sunday.
Most birthday parties for 1-year-olds get messy as the cake is usually more worn than eaten by the celebrant.
But Blair didn’t get to enjoy cake, or any other solid food, because he’s about to have a rare surgery to fix his tracheomalacia.
His parents, Joe and Brandy Fehlker, have known about the impending surgery since before he was born. Joe, the girls basketball coach at Hillsboro High, and Brandy are traveling to Boston this week so the one doctor in the country who specializes in the operation can put Blair on a path to recovery.
Everything about Blair seems fine. He’s happy, loves attention and his grin will melt your heart. But when he breathes, there’s a slight rattle because the cartilage in his trachea isn’t rigid enough to hold his airway open. When it collapses, it keeps Blair from being able to eat solid food and hinders his breathing.
So seven times a day, Blair is fed through his stomach using a gastrostomy button. It’s been the source of his nourishment for most of his short life.
“He’s doing really well with his foods,” Brandy, 32, said last week. “About a month ago, we learned a new way of feeding him that is much quicker.”
It used to take 30 minutes to feed Blair through a pump machine. Brandy was pumping breast milk for him. One of the Fehlker’s chief concerns this past year was Blair didn’t gain any weight between four and eight months.
“Just like anyone, when Blair gets sick he can’t digest the same amount of food, so we would have to adjust his feeding schedule,” Brandy said.
Blair has already had nine surgeries. In Boston, he will first have an exploratory surgery to map out his condition. Then the second surgery will be performed by Russell Jennings, surgical director of the Esophageal and Airway Treatment Center in Boston.
I watched a YouTube video of Jennings explaining what is tracheomalacia (pronounced trakeomalasia), the surgery and the after-effects. In 2013, Jennings created a new type of treatment where he takes the back membrane of the trachea that collapses when the child exhales and then sutures it against the spine.
“To do that, we have to move the thoracic duct, vagus nerves and esophagus,” Jennings said in the video. “Now when you exhale, the spine holds the trachea open. Almost in every case, fixing the back of the trachea makes them significantly better.”
About 10 percent of the time, doctors have to fix the front of the trachea after attaching the back. That is a much more complex surgery that requires a heart surgeon. Each child has to have an operation designed specifically for them.
“Recovery depends on the lung function before surgery and how well the child responded to the surgery. If their lungs are in good shape, they may go home in five to 10 days,” Jennings said.
Over the last three years, Jennings has treated more than 150 patients with severe tracheomalacia and all of the symptoms are nearly gone and the patients are living normal lives.
“We think this is a very effective strategy for treating an illness that is very under-recognized,” Jennings said.
Day to day care
It’s a typical Thursday night at the Fehlker home in Festus. The house is 100 years old and spacious. There’s plenty of room for Blair’s 4-year-old brother, Flynn, to run around and play. Like any boy his age, Flynn’s a bundle of energy. But he doesn’t mind the extra attention that’s paid to his little brother.
Joe Fehlker, 35, a guidance counselor at Hillsboro, helps Brandy, an art teacher at Festus High, get the boys ready for dinner. They serve up homemade lasagna, garlic bread and a Caesar salad. Although he can’t enjoy bites of “grownup food” like Flynn, Blair is seated at the table with his family and plays with plastic spoons and blocks. It’s in between his feeding time.
Joe talks about how chaotic the first nine months of Blair’s life were, how every time it seemed he had made some progress, it resulted only in more hospital stays and illnesses.
“Every time we think we’ve turned the corner, something else pops up, like his esophagus tearing,” Joe said.
Luckily for the Fehlkers, they have plenty of family support to help with Blair and Flynn. Joe’s parents, Bob and Mary, are retired and live in Festus. They watch Blair during the week while Joe and Brandy work.
Bob Fehlker taught junior high social studies at Hillsboro for 29 years and coached baseball and basketball for more than two decades.
Knowing what they were facing before Blair was born was important, Joe said. Both he and Brandy have diligently read up on Blair’s condition, taken CPR classes and have become students of medical jargon.
“Brandy does a lot of research,” Joe said. “But there’s no way we could have estimated the variables with what Blair is going through.”
Blair had just returned home from a hospital stay last April 30, the day after Brandy’s birthday. Heavy rains caused the Fehlkers’ basement to leak and Joe was doing cleanup before lunch. Blair was ready to eat but he couldn’t swallow his food and he all of a sudden he couldn’t breathe.
“Brandy started yelling for me to call 911,” Joe said. “That was really scary for me, but she was like, either save his life or be upset. Those were the only two options.”
Brandy said she had just gotten CPR training for infants and she felt like she knew what to do.
“I went into mom adrenaline fight mode,” she said, jostling Blair on her knee as he grabbed clumps of her long brown hair. “There was a progression where he was choking, then he stopped making noise and he got a little bit limp and I knew it was coming. I tried patting his back but it wasn’t working and I felt less muscle tone and he started to lose color.”
Just like in a movie, Brandy swiped everything off of the table in their living room, laid Blair there and gave him 30 compressions to the chest and two breaths in his mouth.
“I only got through the first set of compressions and two breaths and two more compressions and he choked up milk and secretions,” she said.
Blair’s color quickly returned to normal and the paramedics arrived at the house to make sure he was stable.
“Flynn witnessed the whole episode and was screaming, crying and yelling, ‘What are you doing to the baby?’ ” Brandy said.
Joe said because of Blair’s extra needs and constant attention, he and Brandy have to make sure Flynn also gets the love and affection he needs.
Flynn’s birthday is Feb. 26 and Blair “crashed” his third birthday when he was delivered on the day of his party, which was a week later.
After the close call in April, doctors in May opened Blair’s esophagus using a balloon.
“I felt like at that point, hallelujah, we’re through this and we can start living our lives now,” Brandy said. “Then 10 days later, Blair had another dilation surgery and in the middle of the night he struggled to breathe and wasn’t taking food well.”
The next morning the Fehlkers met with a surgeon and were told Blair’s esophagus had torn open, which Brandy said is very uncommon.
Blair spent the next three weeks back in the hospital, where he had an IV in his chest filled with saline and a blood thinner.
“That was the highest amount of maintenance he’s needed during the past year,” Brandy said.
The road to recovery
I first learned of Blair while covering the Festus boys basketball game against De Soto in January. A 50-50 drawing was being held to raise money to help the Fehlkers with expenses for the upcoming surgery, which was supposed to be in January. But Blair got sick and had to be hospitalized, which postponed the procedure.
Joe got the flu the same week and couldn’t even the Hillsboro girls basketball team.
“That was a pretty devastating week,” Brandy said. “You have down days and they’re bad.”
There have been many fundraisers to help the Fehlkers. At Festus High, the Key Club sold pizzas, the science department held a “Time for Dinner” and the student council sold T-shirts. Members of Hillsboro’s girls basketball team gave the Fehlkers gift cards and the school’s teachers also raised money. And as of Sunday, $2,080 has been raised on a GoFundMe page.
Brandy and Blair flew to Boston on Tuesday and on Friday, Blair will have an exploratory surgery to map out what could be his final surgery on March 16. That involves doctors suturing his trachea to his spine. Any surgery involving such delicate parts of the throat aren’t to be taken lightly.
“He’ll be uncomfortable and you worry about that,” Brandy said. “I feel a little desensitized because we’ve been through so many surgeries. But this is a big one. Those muscles are the most finicky muscles in the body. But we have to be optimistic.”
Joe and Flynn will fly to Boston separately. If all goes well, the entire family could be home by the end of the month.
Raising two sons at such a tender age is as trying as it is rewarding. Brandy said because she and Joe have to “divide and conquer” when it comes to their sons’ care, they’ve never spent as much time apart.
“Sometimes we have to take care of our children in two different locations,” she said. “We’ve had to lean on and depend on each other for emotional and mental support. We’ve always been a team and have supported each other.”
Each time Joe visits Blair in the hospital, it puts his family’s situation into perspective.
“You walk through the hospital and there are kids who will never leave there, or their lifespan isn’t projected to be a full life,” he said. “And we have a kid who’s going to get better.”
Brandy said she’s talked to another parent who has a child in a similar situation.
“I always ask what their quality of life is like and have always heard very good things,” she said.