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Battling the odds:12-year-old dealing with congenital heart defect

12 min read
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Parker Muhleman

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Parker Muhleman, pictured in 2019, was diagnosed with a congenital heart defect, Hypoplastic Left Heart Syndrome, when his mother, Stephanie, was 18 weeks pregnant with him.

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Parker Muhleman, pictured in a 2019 photo, had a love for life and baseball.

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Parker Muhleman

His voice quivering and the tension building inside of his body, Parker Muhleman stood in front of the Allegheny College baseball team and told his story.

By the time he finished, many of those who were listening had either placed sunglasses on their faces or simply wiped their eyes as tears welled up.

It is not often that a 12-year-old can move the emotions of grown men and college athletes.

To know Parker Muhleman is to understand this is not the typical middle school kid.

Standing in front of college baseball coaches and 20-plus year-old ball players and talking about himself and his journey was not that big of a deal.

He is way past the big deal stage.

Parker Muhleman was diagnosed with a Congenital Heart Defect – Hypoplastic Left Heart Syndrome – when his mother, Stephanie, was 18 weeks pregnant with him.

Stephanie and Dave Muhleman, Parker’s father, were left with three choices – abort the pregnancy, allow Parker to be born with no intervention or have Parker go through a series of three reconstructive surgeries.

“It was the biggest decision we ever faced,” Dave Muhleman said. “Being Catholic, you don’t think of the other choices. When you’re raised Catholic, no abortion. But the options in front of us created a different mindset. The decision about a life was not as easy as it should be based upon religion.”

Stephanie said the couple met with the surgeon – Dr. Victor Morell, chief of pediatric cardiothoracic surgery, UPMC Children’s Hospital of Pittsburgh – to help with the decision.

“He was so optimistic, and such a wonderful person,” she added. “We had gone to Boston to look at an experimental treatment. But we decided not to go through with that. My health and the possibilities of what the baby would have to go through just didn’t convince us.

“We decided that we would take our lumps and see where it goes.”

Stephanie gave birth to Parker, who was breached, at Magee Womens Hospital in Pittsburgh. The C-section was successful, but Parker was immediately placed on a number of machines and separated from his parents at Children’s Hospital, a few blocks away.

“I learned about Forbes Avenue pretty well, going back and forth,” Dave Muhleman said.

Stephanie finally got to see her boy about two days after giving birth.

Four days into his life, Parker had the first of the three surgeries. The second surgery came six months later, and the third procedure was performed just prior to his third birthday.

After the initial surgery, Dave could actually see Parker’s heart beating as the infant laid in a hospital bed, chest cracked open, with cellophane over it.

“It was weird but one of the coolest things I have seen, especially knowing Parker was alive,” he said.

Despite the surgeries, Parker’s Hypoplastic Left Heart Syndrome will never be cured.

At some time, he will need a fourth surgery to close a fenestration hole. The hole works like a pop-off valve in case the pressure in his lungs gets too high. Eventually, Parker may have to have a heart transplant.

“Half of his heart is very small,” Dr. Morell said. “As the surgeon, I was the plumber creating a plumbing that allows the patient’s heart to work.”

Morrell said that prior to 1980, all of “these kinds of patients died.”

“New techniques allow them to survive,” Morell said.

He added, even now, that 15 to 20 percent of the patients nationally don’t survive the first operation.

“The second operation is basically a redoing of the plumbing,” Morell said. “The final operation, we’re separating the blue blood from the red blood. Kids with this condition have it mixed.”

“All we wanted for him was a regular life, to be a regular kid,” said Stephanie Muhleman. “We got that. He can be mouthy (only at home) and a general pain in the butt.”

And an inspiration to anyone who knows him and watches him play golf and baseball

This spring, Parker, as a 7th grader, played second base for the Washington Middle School baseball team.

He is part of the Southwest Pennsylvania Junior Golf Tour that began this week. Parker plans to play in numerous events over the summer.

He has been a regular all-star selection in his time as a player in the Washington Youth Baseball league and continues to amaze, succeed and excel despite his diminutive stature. Parker’s Chamber Insurance team participated in the Pony playoffs this week.

“I worry about how small I am,” said Parker, soon to be a teenager. “I think I’d gain some confidence if I weren’t the smallest kid on the field.

“I have something to prove.”

Allegheny baseball coach Brandon Crum thinks Parker has proven a lot already.

“When he read the letter, he had written to us as a team, he stood there like a man and delivered his message,” Crum said. “His voice was getting shaky, but he gathered himself and finished it.

“Our guys were struck by what he said. It brought them back to earth and reminded them that they have the opportunity to go out and play baseball every day. They have the joy of doing what they love to do.

“That was a good day for all of us. Parker is a remarkable kid. His reality is that he has battles, and he handles those battles each day.”

Playing with The Boys

What started as a search for stickers to decorate a foot locker given to him after the death of his aunt, Alissa, has evolved into something much more.

Parker decided to contact colleges and universities about sending him the stickers.

Not only did he hear back from a number of schools and baseball programs, Parker received nice letters, some hats and other items.

The footlocker has special meaning as Parker and Alissa, one of his biggest fans, were close. Now that it is decorated with stickers, Parker has started a scrapbook to keep the other things together and in order.

Crum said Parker’s letter was far different from many requests he receives from folks just trying to get a hat or some piece of memorabilia.

“His seemed so genuine,” Crum said. “And he said his aunt was an Allegheny College alumnus and former Gators’ softball player.”

Parker was invited to Allegheny’s early-season doubleheader at Waynesburg University.

His dad took him to Greene County and Parker delivered his speech and actually participated in the Gators’ pregame warmups.

“He had me reaching for my sunglasses pretty quickly,” Crum said. “What he said to us impacted every one of us.”

Parker held his speech, written out on two pages of lined paper. He told his story.

“Hi. My name is Parker and I have Hypoplastic Left Heart Syndrome. But I don’t let it stop me from playing my favorite sport, baseball.

“I’ve had 3 open heart surgeries, but I call them my Double Play. The first one was when I was 4 days old, the second was when I was 6 months old and the last was when I was 3 years old. Get it? 4-6-3? Double Play!

“…. My cardiologist told my parents I would never play sports again and should learn to play chess, but from the time I could throw a ball, baseball was all I ever wanted to play and watch.

“I started playing organized rec ball when I was 4-years-old and travel ball when I was 7-years-old. I’ve been on an all-star team. Since I was 7-years-old and for the past three years, my team won our Rec championship. This year, I will be playing for Wash High and Pony baseball.”

“It was powerful,” Crum said. “The guys took to Parker. He was out on the field. He threw catch with our starting pitcher. We were 0-5 at that point and we needed a boost. Parker provided one in so many different ways.”

Parker also visited with the Indiana University of Pa. baseball team and delivered his speech to that squad. Again, he was invited to participate in pregame warmup.

“He actually took some grounders and was given a few tips by one of IUP’s infielders,” Dave Muhleman said. “He thoroughly enjoyed the experiences and he took those tips and has been working on them since.”

Parker’s middle school baseball experience was positive. His coaches said he was focused, determined and enthusiastic.

“I taught him in 5th grade and now have had the opportunity to coach him,” said Anthony Belcastro, Washington’s head baseball coach. “If you hadn’t talked to his parents about his condition, you would not know Parker had an issue at all.

“His is outstanding academically. I had the chance to see the middle school team’s last game and Parker is very fluid in the field and his hands stood out to me. He is small but fundamentally sound. His defense stood out to me.”

Joel West, the Washington Middle School coach, added that Parker gave great effort.

“To me, he acted like other kids,” West said. “He gave all of his effort at every practice and every game. He proved he can play.

“Parker’s a great kid and has passion for the game. He is fearless. He doesn’t let anything hold him back.”

Stephanie said that she or David are at all of Parker’s practices and games.

“Jut in case he needs some immediate help, we are there to try and facilitate what needs to be done,” she said.

The pride Stephanie and Dave have in their son is obvious. They marvel at what he has done and is doing. His opportunities are not taken for granted.

“I’ve helped coach him since he was 4-years-old,” Dave Muhleman said. “Every time I see him do something really impactful makes me appreciate that he may have never had the chance to do it.

“Playing in the semifinals of the (WYB) Bronco League playoffs, he came on in relief and recorded a save. He faced the meat of the order. When Parker does something like that, it chokes me up. You realize most of the kids out there don’t have the same issues.”

Said Stephanie: “We never thought Parker would do this. He’s a pretty shy kid. When he gets to know you, he won’t shut up. He takes his meds and is a typical boy of his age. He can be sassy and even smart mouth. But he’s a good kid. He amazes us every day. He is a true warrior.”

Make A Wish

Parker’s condition afforded him the opportunity to participate in the Make A Wish program.

Parker’s wish of attending a PGA Tour event was granted in the summer of 2014, when he was 8-years-old. He attended the Barclay’s in Paramus, New Jersey.

Dave Muhleman said during his son’s “Wish,” Parker was “treated like a pro from the moment we arrived at the hotel.

“He was granted full access to the grounds for the week, given his very own locker in the players’ locker room, attended a players’ press conference, given his own spot on the driving range where he hit balls next to Jason Day, and received a tour of the Callaway Equipment trailer.”

During the experience, Parker met numerous tour pros including Rickie Fowler, Jordan Spieth, Hunter Mahan, Eric Compton (who has had two successful heart transplants), Rory McIlroy, and Phil Mickelson.

“They were welcoming and respectful,” Parker said of the professional golfers. “It was fun.”

“The highlight of the trip came, during the Pro Am, when Parker was asked to join Graeme McDowell inside the ropes,” Dave Muhleman said. “During this time, Parker walked three holes with Graeme, often stopping along the way to hit some shots with his new wedge that was given to him by Graeme.”

Parker also participated in the Pens and Pins Make A Wish bowling event that was sponsored by the Pittsburgh Penguins in 2015. Parker was able to hang out with and bowl alongside former Penguins’ goalie Marc-Andre Fleury and meet the entire team.

Parker has used all of his experience to press forward in his own academic and athletic pursuits.

He is consistently on the high honor roll and strives to be better at the sports he plays.

“I plan to work out more and lift more weights,” he said. “Things have worked out better than I thought they might. I was nervous at first. I think it’s good for me to spread the word about being able to overcome a condition and not giving in.”

Morell said the expectations for Parker is for a longer and better life.

“The whole process is significantly better,” Morrell said. “He’s able to do what he wants. Everyone has a little different way they go about living their life.”

Crum said Parker will be successful because of his attitude and belief in himself.

“Parker is a remarkable young man,” Crum said. “He will do just fine with whatever he does. The game, a test, nothing will affect him because of what he has been through and continues to overcome. No moment or thing will be too big.

“The reality is, he has had great battles in his life, and he has overcome them. He’ll be able to handle anything. His parents are awesome and give him the support he needs. For them to allow him to miss a day of school and come and speak to our team, speaks to how they understand the situation. They are enabling him to face the battle head on. Parker is winning that battle.”

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