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Teagan's incredible heart: One Utah family's fight for their little superhero

Published: Friday, July 31 2015 7:48 a.m. MDT

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography)

Although every superhero is impressive to 6-year-old Teagan Dash Pettit, if asked which one he likes the best, his answer would be Iron Man because, as Teagan says, "Iron Man has a heart like me."

Teagan was born on March 10, 2008, to Ryan and Brytten Pettit. At 9 pounds 4 ounces, Teagan appeared healthy and the Pettits were happy to bring home the newest addition to their family. But only four days into Teagan's life, a pediatrician found the color of his skin concerning. The Pettits were immediately sent in an ambulance to Primary Children's Hospital.

There they were notified that Teagan was born with half of a heart — a condition known as hypoplastic left heart syndrome and news that would affect their little boy for the rest of his life.

"At first we were like, 'Um, I think you have the wrong kid, the wrong diagnosis.' We thought it would be something more simple and that these kind of things wouldn’t happen to us," Brytten said.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography)

"And then once we accepted it, we just kind of had to go through the steps to do what it would take to keep him here on earth with us."

That day the Pettits were given three options for Teagan.

"They just said you can either stay here at Primary Children’s and he would need the first of three open heart surgeries, or you can leave the state and go try to get a heart transplant, but those aren’t very easy to do. And the third option was to just go ahead and take him home, and he would pass away in a couple of days," Brytten said.

After consulting with the doctors, who believed Teagan was healthy enough to have surgery, the Pettits decided to pursue the open heart surgery, which would prolong Teagan's life and the time before he would need a heart transplant.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography)

On day seven of Teagan's life, he had his first open heart surgery, called the Norwood. Previously, when deciding Teagan's full name, Ryan and Brytten allowed their oldest child, Mason, who was 3 at the time, to choose Teagan's middle name. As a toddler and a fan of Disney's "The Incredibles," Mason chose Dash.

"In the hospital that just took off," Brytten said. "Everyone just called him the Dash man and our little Incredible with an incredible heart."

Within those first few days of Teagan's life, as members of The Church of Jesus Christ of Latter-day Saints, Ryan and Brytten chose to give Teagan his baby blessing in the hospital.

"On Sunday, March 15, 2008, we decided to have a special day of fasting and prayer and to give Teagan his name and blessing in the ICU," Ryan wrote on the family's blog.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Courtesy of Brytten Pettit) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Courtesy of Brytten Pettit)

"We attended a short sacrament meeting at Primary Children's Hospital. The songs were never sweeter to my ears. As I pondered our Savior's love for us and his atoning sacrifice, a comforting thought came to my heart: Our Savior suffered all to take upon himself not only our sins but our infirmities, pains and sorrow. As I grasped this thought during the sacrament, I cried. But not for my son, for my Savior."

Ryan then gave Teagan a blessing.

"We’ve relied on the words of that blessing many, many times," Brytten said. "We’re grateful for all the blessings that Teagan’s had that reassure us that this is just a small part of the plan for Teagan."

After six weeks of recovery, Teagan was able to go home, but by the time he was 4 months old, it was time for another surgery. In July of 2008, Teagan had his second open heart surgery, called the Glenn, and was given a permanent gastric feeding tube.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography)

After eight weeks of recovery, Teagan left the hospital.

"We went home and decided this was our new normal, and we’ve got to just try and live the best we can because we don’t know how long we are going to be able to keep him with us, so we’ve just got to make the best of it," Brytten said.

"And surprisingly Teagan did really well, and he really thrived for the next couple of years. He still was mostly G-tube fed, so he didn’t eat a lot orally, but other than that he looks like your average 2-year-old, 3-year-old, 4-year-old. He was able to start preschool and be a pretty normal kid."

Days away from the hospital became more and more frequent for Teagan until July 2013 when it was time for his third and last open heart surgery procedure, called the Fontane. The surgery went well, and Teagan left the hospital after 12 days.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Cortney Wortley, Harper Grey Photography)

"Things seemed all right, but in February (2014) he was diagnosed with what they thought was pneumonia," Brytten said.

Teagan was once again checked in to the hospital and stayed there for treatment for 28 days, celebrating his sixth birthday in the hospital. Only a few weeks later, Teagan returned to the hospital and was diagnosed with plastic bronchitis, a rare complication from his most recent open heart surgery.

"The only thing that can help at this point is a heart transplant," Brytten said. "So we got him listed as a heart transplant, and as his condition has gotten worse his status has moved up on the heart transplant list. … Now we're just waiting for someone to give us that gift."

Although Teagan's diagnosis was painful for Ryan and Brytten, they were grateful there was still a chance for their son to live.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Courtesy of Brytten Pettit) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Courtesy of Brytten Pettit)

"We’re just grateful that there’s anything they can do to help him because when they first told us he had plastic bronchitis we kind of thought that was kind of the end of his life," Brytten said.

"We didn’t think there was much they could do for him and that it would ruin his chances of getting a heart transplant. And so when they brought up considering a heart transplant we were relieved, actually, and very grateful that there was still something that they could do to save his life."

Now the waiting begins. Teagan is at Primary Children's Hospital where he will most likely stay as he waits for his heart, something Brytten knows is a hard thing to pray for.

"We don’t want anyone to have to go through what we’re trying to avoid going through, but we’re just praying that a family will say yes to organ donation," Brytten said.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. Photo was taken July 2013, after Teagan's third open heart surgery. (Courtesy of Brytten Pettit) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. Photo was taken July 2013, after Teagan's third open heart surgery. (Courtesy of Brytten Pettit)

"We know that on their very worst day when they’re having to say goodbye to their child we’re asking them to save our child, basically, and we just pray that they can find it in their heart to say yes and to let their child live on through someone else’s."

Through it all, Teagan has continued to be optimistic.

"He’s super positive. He just says, ‘When my new heart comes, I get to do this, when my new heart comes, I’ll get to do that.’ He loves the hospital. Everyone here treats him so good. He feels safe here and comfortable. We just have to stay positive for him, and we can’t loose hope that a heart's coming. We just try to see the glass as half full and not really think too hard about how bad it is," Brytten said.

"He's taught us what's important in life and just to cherish every day because you don't know when it will be your last. We've always had to live with that attitude, that it's not about quantity, it's about quality.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. He is shown in July 2013. (Courtesy of Brytten Pettit) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. He is shown in July 2013. (Courtesy of Brytten Pettit)

"Teagan has just really taught us that. He loves big, for only having half a heart he loves big."

Throughout Teagan's life, and especially now, the Pettits have relied on their faith. Not only has Teagan received many priesthood blessings, but Brytten explained the comfort such blessings have been to her as well.

"We rely on our faith a lot. We believe that we have a Heavenly Father who loves us and that he has a bigger plan than this for Teagan and for our family," Brytten said.

"I just had to realize that our Savior’s already suffered for us. It came more into play that he didn’t just suffer for our sins, but he suffered for our pains and our afflictions. He’s already carried all of Teagan’s pain and mine. I just rely on my Heavenly Father all the time to just bring me comfort and peace when it feels like you can’t find it anywhere else.

Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Courtesy of Brytten Pettit) Teagan Pettit, 6, was born with hypoplastic left heart syndrome and is currently on the list to receive a heart transplant. (Courtesy of Brytten Pettit)

"We live one day at a time, and sometimes it’s one hour at a time, and sometimes it’s one night at a time because it can get pretty scary and rough. But, we just keep hanging on."

A benefit concert for Teagan, put on by LDS musician Paul Cardall, will be held on Monday, June 23, at Copper Hills High School. "American Idol" contestant Kenzie Hall will also be performing at the event. The concert begins at 7:30 p.m., and a silent auction will take place one hour before.

"It’s not necessarily about the money, although that will really help a lot of these big medical expenses," Brytten said.

"Mostly, the thing we can't buy is a new organ. We cannot buy a new heart. We just need somebody to say yes, and so we hope by getting the word out that this sweet little 6-year-old boy needs it, that people will hear our message and say yes to organ donation."

Teagan Pettit is shown at Primary Children's Hospital shortly after he was born on March 10, 2008. (Courtesy of Brytten Pettit) Teagan Pettit is shown at Primary Children's Hospital shortly after he was born on March 10, 2008. (Courtesy of Brytten Pettit)

Email: spetersen@deseretnews.com | Twitter: @Sarah_DNews

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