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Congenital Heart Defect/Disease

Photo Series Captures the Pains and Triumphs of Kids With Heart Conditions

Elisabeth Brentano
 • 
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Photographer SheRae Hunter specializes in portraits of babies, but for her latest photo series, she put the focus on children with congenital heart defects (CHD). Hunter met the children and their parents two years ago at a fundraising event in Winchester, Virginia. She later connected with them on Facebook, and after following their daily lives on social media, she wanted to make a difference for the families.

Her mission is to help increase awareness for CHD, and with her powerful images, give a voice to the families who might not be able to speak out. “I can try to see these children how their parents see them — fragile and scarred, but brave and mighty. Broken, but perfect,” Hunter wrote on her website. “I can listen and not judge, not offer advice, or extend pity, but just listen.”

Girl with congenital heart defect
Maggie, age 2, has three congenital heart defects and loves animals, especially dogs.
Girl with congenital heart defect
“You can never prepare yourself… you feel so helpless as a parent, because there is nothing you can do to change it. But then your child shows you how strong and brave they are…” – Maggie’s mother

Children with CHD have abnormally structured hearts and/or enlarged vessels, and the condition ranges from moderate to life-threatening, according to the Children’s Heart Foundation. Most of the children in Hunter’s photos have had multiple open-heart surgeries, and their chest scars are proudly on display.

Jodi Lemacks, National Program Director for Mended Little Hearts, praised Hunter for her work. “It is so important for kids to see other kids like themselves too,” Lemacks told The Mighty. “They often feel different and like no one understands. Seeing others makes CHD feel more ‘normal.’ We often feel like their lives are filled with so many challenges, medical challenges and everyday issues, and to see them having fun makes us feel hopeful — like we can let go of the CHD for a while and just be everyday people.”

Boy with CHD
Colton, age 4, who is “always smiling.”
Boy with congenital heart defect
“[We are] taking the good, no matter how tiny, and the bad, no matter how big, as it comes. Have hope that [he] will overcome this…hope for a miracle.” -Colton’s mother
Girl with Congenital Heart Defect
Emilee, age 3, has had nine open heart surgeries.

Girl with Congenital Heart Defect
“After her last open heart [surgery] I looked at her big, beautiful lips and her cute toes, and I realized they were pink! After 2 1/2 years, my daughter was finally pink! I’d never seen her with pink [skin] and at the moment I fell onto her bed crying tears of joy. I knew she was going to have a longer, happier life than the 3-5 years they gave us…” -Emilee’s mother

 Hunter said the highlight of the project was simply working with the the children, and the harder part came when she opened the notebook filled with the interview responses for the parents. “Every single handwritten interview moved me to tears,” she told The Mighty. “I couldn’t even read through them all at once.”

Boy with Congenital Heart Defect
Anthony, age 3, loves Mickey Mouse and has had four open heart surgeries.
Boy with Congenital Heart Defect
““The best advice ever given to us? ‘You will have your own normal, don’t worry about what other families do. You will establish your own normal…its okay to be a little different.’” -Anthony’s mother

“Most CHD kids do not look sick, but their scars are very real,” a spokesperson for the Children’s Heart Foundation told The Mighty.  “CHDs are the most common birth defect with 40,000 babies born each year. Despite these numbers, CHDs are not well known. Because of this, spreading CHD awareness and funding research are so very important.”

wm5
Madeline, age 5, loves to sing and dance.
Girl with congenital heart defect
“How important God is as our foundation! And we are blessed beyond measure by having Madeline in our life.” -Madeline’s mom

Hunter encourages others to share the images, and to use the #zipperstrong hashtag on social media to keep the conversation going. “This project is my humble and sincere attempt not only to understand the world of these families and children, but to give you a glimpse into their world, that you might seek to understand as well,” she added on her website.

Boy with congenital heart defect
Caleb, age 6, is a ” fun-loving goofball always ready for a good adventure.”
Boy with congenital heart defect
“Our whole world changed, what we once thought of as certainty was long gone. We learned to appreciate every breath and moment…we value each other more…” -Caleb’s mother
Girl with congenital heart defect
Kaylen, age 2, had her first open heart surgery at just 4 days old.
Girl with congenital heart defect
“Handing our daughter off to medical staff…knowing they were going to stop her heart for the procedure..it’s the hardest thing we’ve ever had to do.” -Kaylen’s mom
Baby with congenital heart defect
Isaac, 4 months old, has already had his first open heart surgery.
Baby with congenital heart defect
“When he cries, sometimes I smile because he was on a ventilator for so long, and he couldn’t cry. It’s weird, I know, but I smile.” -Isaac’s mom

All images courtesy of SheRae Hunter / SL Hunter Photography

For more information on CHD, visit Mended Little Hearts on Facebook, and check out their Rock Your Scar campaign, which is currently hosting a photo contest to raise awareness for CHD.

Elisabeth Brentano
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elisabeth-brentano
Originally published: February 13, 2016
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