Every Scar Tells a Story

 

No two scars are identical —and neither are the stories behind them. Meet the winners of this year’s #RockYourScar contest and learn a little about each one’s heart journey.

By Paula Felps

Every year, Mended Little Hearts® holds a photo contest to raise awareness about congenital heart defects (CHD) and to show the power of heart warriors of all ages. Now in its seventh year, the #RockYourScar™ contest has become an international campaign that continues growing with more entries, more voters — and more awareness about CHD.

The campaign was built around patients showing their scars, both external and internal, because heart warriors often feel ashamed of those scars. With #RockYourScar, they are a symbol of empowerment, not embarrassment, and show the bravery and strength of the heart warriors who wear them.

Despite restrictions caused by pandemic-related lockdowns, this year’s entrants found creative ways to show how they rock their scars. The 650 entries earned a total of 74,410 votes, including 5,224 votes for the People’s Choice winner. In the pages that follow, you’ll meet the winners and find out more about how they rock their scars.

THE WINNERS:

Age 0-23 months: NOAH

Baby With CHD in Recovery

Leeah Wallace was 20 weeks pregnant when doctors found a problem with her son’s heart. “They actually gave us a different diagnosis and told us he’d have to go into surgery as soon as he was born,” she says. But when Noah was born, they discovered he had Tetralogy of Fallot. Instead of going into surgery, he spent 12 days in the neonatal intensive care unit. At 5 months old, he returned to the hospital for his first open-heart surgery.

“He came home after that, but we went back to the hospital two days later because he wasn’t acting right,” Wallace says. “He ended up coding on the table at the hospital, but they did CPR and got him breathing again.”

Noah spent the next three months in the hospital, which was a 45-minute drive from the family’s home.

“It was definitely a very hard time and very scary,” she says, “but it brought us all a lot, lot closer as a family. His brother and sister share about it in school all the time.”

Today, Noah is 19 months old and recently had a stent put in to improve blood flow to his lungs. This winning photo was taken on his one-year heartiversary and Wallace says he is a thriving, happy little boy.

“He loves chasing his brother and sister around and he loves to jump on the trampoline,” his mom says. “That’s probably his favorite thing in the world.”

Age 2-4: JEMMA

When Jacki Caudill first learned that her unborn baby had a heart defect, she kept it a secret.

“I was afraid my friends and family would treat her differently if they knew,” Caudill says. Jemma, who was born with an aortopulmonary window and an atrial septal defect, had her first surgery when she was just 5 days old. Today, she is an active, healthy 4-year-old who loves swimming, gymnastics and dance.

“It’s important to me that Jemma doesn’t grow up thinking that she can’t do something because of her heart defect,” Caudill says. “I want to empower her to know that she is beautiful, and she can do anything she puts her mind to.”

These days, Caudill willingly shares Jemma’s story to encourage other parents. She shares updates about Jemma’s journey on social media and is a member of Mended Little Hearts of Baltimore. Although the family always does something special to celebrate the anniversary of Jemma’s heart surgery in August, finding a place to celebrate this year presented a challenge — so they did a photo shoot instead. It resulted in this winning entry.

“My hope is that by sharing our story and photo, I reach the new parents trying to navigate the turbulent times,” Caudill says. “I was so afraid to share my story in the beginning. Now, I’m happy to share my smart, strong, confident, sassy, silly heart warrior!”

Age 5-8: TEYANA

Until her daughter’s diagnosis, Olga Arnold didn’t know that children could be born with heart conditions. But Teyana, now 6, was born with Tetralogy of Fallot and had two open-heart surgeries in her first year. She also had hearing loss in her right ear and complete loss of hearing in her left ear, which has made her endure several additional surgeries in her young life.

When it came time to celebrate Teyana’s fifth birthday, her mom scheduled a photo shoot that turned out to be a winning entry. “I was thinking of ways to celebrate turning 5,” Arnold says. “We were told she may not make it to her fifth birthday, so it was major for me. And I was thinking, she’s like a butterfly. She started off so small and now she’s flourishing and beating the odds, soaring everywhere.”

Arnold has shared Teyana’s journey on a Facebook page, Teyana’sHeart, and wants to educate others about CHDs. She also uses the page to celebrate Teyana’s life, milestones and accomplishments.

“She’s a fun little girl and the journey she’s been on has been quite tough for me as a mother. But Teyana fights every day to be everything she isn’t supposed to be today.”

Age 9-12: MYKA

Although Angela Eilers had entered her daughter’s photo in the Rock Your Scar photo contest before, winning it this year was a slam dunk — literally.

“My three kids were playing in the backyard having a pool basketball dunk contest,” Eilers says. “I was just snapping pics from my phone to show them what their dunk looked like.”

The image of 11-year-old Myka flying through the air to make her dunk perfectly captured the strength and determination that Eilers has seen in her daughter since birth. Born with undiagnosed pulmonary stenosis, she had two open-heart surgeries before her first birthday.

“I always hoped that Myka would embrace her ‘special heart’ and not ever see it as something that would hold her back,” Eilers says. “I wanted her to always feel strong and empowered as a girl. I want her to live life knowing she can do anything she sets her mind to. Never underestimate these heart kids; they are strong and powerful.”

Age 13-17: NATALIE

When Natalie was born with an atrial septal defect and a cleft mitral valve, doctors told her parents it was a simple CHD that could be fixed with a single surgery. That wasn’t the case.

“She had her first open-heart surgery at 2 years old to patch the ASD and fix the mitral valve,” says her mom, Amy Jeffs. “She did great until she turned 6, and they said her mitral valve needed to be fixed again.” After her second open-heart surgery, doctors found liver damage and, by the age of 12, she needed a heart and liver transplant.

“Recovery was beyond difficult, but she is a rock star and has done so well,” Jeffs says. Now 13, Natalie suffered a setback in February when she had a small stroke. “It looks like because of this stroke she may be facing brain surgery, but we know she will fight this, too.”

Natalie loves contests and was eager to enter the #RockYourScar photo contest: “We knew it would be something fun to do since she has been strictly quarantined.”

However, finding the right place to take a photo was more difficult, as Natalie must stay inside due to restrictions both from her transplant and COVID- 19. After taking several indoor photos at the Ronald McDonald House in Cincinnati, where they are living as Natalie recovers, Jeffs entered her favorite: this photo of Natalie gazing out the window.

“This picture shows her looking out the window dreaming of all the new possibilities with these two new organs to support her,” Jeffs says. “I hope this photo shows that if you keep fighting through all the hard stuff, anything is possible.”

Age 18-25: TONI

Toni Conradi was more surprised than most when he learned he’d won his age category of the #RockYourScar photo contest: “My girlfriend and a good friend of mine thought it would be a great surprise to enter the contest for me,” Conradi says. “They knew the videos for [previous] #RockYourScar contests have been important to me; they gave me a lot of courage before my surgery last spring.”

Conradi, who was born with severe aortic stenosis and aortic regurgitations, says he has not let having CHDs prevent him from enjoying life: “I have always been very active. I exercise and I love to work in the volunteer fire brigade in my hometown.”

Last year, he learned he needed surgery to implant a mechanical heart valve. That led to a pair of photo shoots. “For me, it was important to have pictures before and after the surgery. A scar is a really big change for a body,” he says.

He decided to wear his firefighter gear in the “after” photo because it symbolizes him following his lifelong dreams.

“When I was a child, I dreamed about being a firefighter. Despite my CHD, I lived this dream and was fighting hard to reach this goal. It is a passion to help people in trouble, and I like to tell everyone with CHD that you should believe in your dreams and live them.”

Conradi, who lives in Germany, is active in an organization for teens and adults with CHD and recently started a blog about his journey with CHD and his mechanical aortic valve. He hopes that by sharing his story, more people with CHD will be encouraged to follow their dreams — and to help others.

“It doesn’t matter which scar you rock,” he says. “You should never give up your dreams. You are not alone with CHD.”

Age 26-39: MATTHEW

Matthew Krajniak knows how to put up a good fight. The 30-year-old was born with hypoplastic right heart syndrome with dextrocardia and has had three open-heart surgeries. In 2014, he had a stent implant.

“Growing up, I didn’t fully realize how serious my heart condition was,” he says. “I knew I had something wrong but didn’t understand why my friends and siblings could play sports and I couldn’t.”

In his teens and early 20s, Krajniak says he didn’t take his heart health as seriously as he needed to, which led to heart palpitations and anxiety. After receiving his stent, he “made major changes in hopes I didn’t do permanent damage. Now, I’m healthier than I have ever been, and know I can still improve both physically and in coping with my anxiety.”

One of the healthy habits he has picked up is fitness, and he began training in mixed martial arts (MMA) in 2016.

“It was something I was always told I could never do,” he says. “After a few years of training and realizing I can push through and hang with these guys, I decided I was going to find a way to fight.”

During a sparring session, a professional photographer snapped the image of Krajniak that won his age category this year. While he isn’t recommending that others with CHDs take up MMA fighting, he does hope he can inspire others to accomplish something they might think is impossible: “Maybe it’s running a quarter mile, maybe it’s doing a few pushups or switching to a healthier diet. Although I’m not fighting on TV, and I’m not in the limelight, I want to give kids someone to cheer on as a CHD warrior.”

40 and Over (Tie)

HOLLY

At 42, Holly Tucci has earned her Wonder Woman costume. Born with complete heart block and a heart murmur, she got her first pacemaker when she was 9 years old.

“Navigating life with a pacemaker is most definitely better than without it,” she says, but she also acknowledges it has been accompanied by challenges — such as the many surgeries to replace the device (she’s on her eighth) and the healing required after each surgery.

“There’s also the experiences of navigating recalls on pacemakers, batteries that run out faster than expected and waking up in the middle of heart surgery.”

Through it all, she has developed greater strength, resilience and determination — just like Wonder Woman. So that costume became a natural choice when she began thinking about entering this year’s #RockYourScar contest.

“My hope in sharing this photo is that others will see parts of themselves,” she says. “I hope that this photo emulates the strength that each of us desires to strive for and to truly embrace the warrior that resides within us.”

She also hopes it will be an inspiration to her youngest son, who was born with the same heart condition she has.

“My hope is that he will see his mom navigating challenges and not allowing fear to stop her — and he will know that living an incredible life and thriving is absolutely possible. Each heartbeat is a gift. It may not always feel that way, but the truth is, it is a gift.”

REBECCA

Even without a photo contest, Rebecca Alford knows how to rock her scar. As the drummer in a classic rock band, The Posers, and beat-keeper for the community band in her town of Ilion, New York, she is always ready to rock.

As a child, she joined band and wanted to play the flute, but didn’t have the lung capacity to play a wind instrument — so she became a drummer instead. It was one of many ways she adapted to living with a CHD that was discovered when she was 5 and led to surgery, where she received a Blalock-Taussing shunt to improve blood flow to her lungs. It was a cutting-edge procedure at the time, and it allowed her to go 20 years before needing surgery again.

“My mom and sister always encouraged me to do what I could and stop when I needed to,” she says. “As I grew, so did my understanding of my condition. I made the best of it, which was easy to with an older sister helping me along the way.”

Alford has had two more heart surgeries since then and has been on medication to treat pulmonary hypertension since 2015. She appreciates her good health and holds an annual Team Rebecca fundraiser to raise money for the American Heart Association Run and Walk. In 2003, she was named Inspirational Honoree for the Utica chapter of the American Heart Association. She is a member of Mended Little Hearts Utica/Mohawk Valley.

With her entry in the #RockYourScar contest, Alford wanted to show that “people born with CHD don’t grow out of it, we grow with it. There are challenges we face along the way, but we are special individuals and can handle it.”

People’s Choice: VALENTINA

Although she hasn’t even had her second birthday, Valentina has shown what it means to be a true heart warrior. She has had four open-heart surgeries, two additional surgeries, eight heart catheters, 28 chest tubes, a life flight to Children’s Hospital of Philadelphia, seizures and both right-sided and left-sided strokes. Through it all, she has remained “the happiest ray of sunshine,” says her mom, Francesca Garnetti.

“When you look at Valentina, you would never know the extent of everything she’s been through. It’s rare that you see her without a smile.”

Garnetti has documented Valentina’s journey on a Facebook page and blog, Valentina’sJourney, and entered the #RockYour Scar contest to bring more awareness to CHDs.

“I knew I wanted Valentina’s picture to show all her surgical and chest tube scars. I don’t ever want her to feel embarrassed or ashamed of her scars, because if it wasn’t for what went on behind those scars, I wouldn’t have my baby with me today.”

Because she has spent her entire life in the hospital, Valentina prefers hospital equipment to toys and is particularly fond of the stethoscope, so it was included in the photo. She was able to go home for the first time in late March.

“These children fight for their lives every single day,” Garnetti says. “They deserve for the world to know and see what they go through. If I can shed light into this world to one new person a day, then I’ve done my job.”

Staff Choice: WILLIAM

William F. Niedringhaus IV was 9 when he was diagnosed with Wolff-Parkinson-White (WPW) syndrome. His first surgery failed when doctors were unable to place a catheter in his heart. It was then they discovered he also had Cor Triatriatum, a rare CHD. He received his first pacemaker at 14, only to have his second open-heart surgery two years later when a patch became partially unattached.

Now, at age 39, he has used nearly all the battery power of his third pacemaker, which he needs to manage his WPW.

“I am proud to be here at 39 because of what it has taken,” Niedringhaus says. He entered the photo contest to underscore that point: “I want to show that people with CHD are not in this alone, and that all the things that have happened in our lives contribute to the experience, whether it be good or bad. It is what has brought us to this place, this point, and has become part of our story.”

One way Niedringhaus manages his stress is to spend time in nature; hiking in the quiet, undeveloped woods near his house; and swimming or soaking in lake in his backyard. His friend, Saul Phillips, sometimes joins him and captured the moment that became the Staff Choice this year.

“As I hike to the lake, there are all these feelings and thoughts that race through my mind,” he says. “When you slip into the water, the focus shifts to your mind, breath and body. This is how I take a break for myself.”