2022
Valentina
4 years old
“Don’t let her cute smile and quiet personality fool you–she is a little dynamite. She loves nuggets, fries and family breakfast on Sundays. She dislikes broccoli, shots and getting her hair brushed.”
Valentina’s zipper is a constant reminder of how much she has already overcome - three open-heart surgeries, three caths and countless doctor’s appointments. Our CHD journey has taught us many things, but one thing Valentina has taught us is that time is the most precious gift we can give to others. Her special heart will always bring us concern but today and everyday we are grateful for the present.
No parent ever envisions having their newborn connected to more wires and tubes than you can count. It is probably one of the hardest things [a parent] will go through, but it's worth it. Life in the hospital is not for the faint of heart, but somehow your baby will give you the strength to keep going.
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We allow ourselves to feel all those hard feelings. We embrace them and know its normal but don’t allow it to consume us. We look at Valentina and see how she thrives every day and that helps us move past the worries and uncertainties that we have no control over anyways.
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- Valentina's parents
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Hypoplastic Left Heart Syndrome
Wyatt
4 years old
"Resilient, strong-willed, loves to be outdoors, riding his dirt bike and always smiling."
We found out that Wyatt would be born with HLHS at my 20 week anatomy scan. He underwent two open heart surgeries before he was six months old and one code event. A few months later, Wyatt went into congestive heart failure and was placed on the heart transplant waiting list. We waited one year and one month at home and Wyatt received his gift of life two days before his second birthday. He continues to thrive each and every day.
A CHD diagnosis comes with a lot of angst, so having a team that takes their time when meeting with you and who you can lean on with any question or concern is important. They care for your family like their own and honestly they become part of your family in such a beautiful way.
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- Wyatt's Mommy
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Hypoplastic Left Heart Syndrome
Heart Transplant
Congenital Heart Disease - Did you know?
Congenital Heart Disease is the most common birth defect.
Carter
6 months old
“He is such a sweet, calm baby. He loves to cuddle and loves his rocking swing and music.”
Carter spent the first 6 months of his life in the CICU. He won over the hearts of many nurses, therapists, and DR’s with his famous side-eye look, furrowed brows, and eventually his little half smirk. Now that he is home, it’s a daily competition between his big brother (7) and big sister (4) of who can make him smile the most.
I want to tell him “You can accomplish anything you want to! Don't let your heart disease make you feel like you can't be whatever it is in life that you want to be. An entire team of specialized doctors were certain you would not make it past day 1 and you have fought so hard against your medical conditions to defy those odds.”
Each new day is a celebration. Each new milestone hit or new sound, movement, et cetera that Carter achieves is celebrated! Every single day he is defying the odds set against him. So for now we continue to celebrate each new day we are given together and small accomplishments because the truth is, we don't know what tomorrow will bring.
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- Carter's Mommy
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Tetralogy of Fallot
DiGeorge Syndrome
Heirshprung Disease
Hunter
6 years old
"Hunter is full of questions regarding his heart and CHD. He loves to take his blood pressure and listen to his heart. He also enjoys playing a variety of sports and instruments. The one thing Hunter dislikes nowadays is getting a COVID test.”
Watching your child endure the fear and pain of not knowing what is happening is the hardest part of this journey. Experiencing feelings of uncertainty of what may happen during surgery or long-term impacts for your child.
It would be wonderful for pediatricians to have more resources available in office or on their website to raise more awareness about CHD. I would have loved these resources. I had no idea what coarctation of the aorta was or that it is a congenital heart disease. People should know that just because a doctor has not diagnosed you or your child yet, it does not mean that a diagnosis is not coming. Learn more now before you have to be completely surprised and unaware as I was.
On the day of our diagnosis, I wish that we had been told the meaning of “CHD” and the impact on our child; the signs or symptoms of CHD; and the treatments for CHD.
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- Hunters' Mommy
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Coarctation of the Aorta
Cooper
23 Months old
“Cooper acts like a normal two year old. He loves Dump Trucks (we have a dump truck company) and playing outside with his three older brothers. He dislikes when he can’t do what his big brothers are doing.”
I wanted Cooper to participate in the Zipperstrong Project to raise awareness for CHD. In Blacksburg, Virginia there is not adequate health care which caused his heart condition to be missed. While pregnant I was sent to maternal fetal medicine where I saw a Cardiologist for the first time in November 2019. At that appointment they said that I came “too far in my pregnancy” and that they were “having a hard time seeing the top of his heart” They wanted me to come back in two weeks; I did and they didn’t say anything at that appointment.
He had to be delivered two weeks early on Dec 31, 2019 because he wasn’t growing anymore. When he was doing his newborn screening tests his oxygen saturations would only go up to 95% so they told me to make sure I told his Pediatrician at his first appointment. I did and she didn’t say anything about it. His body temperature was so low at this appointment we had to warm him up which took a heating pad and three outfits to do so.
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- Cooper's Mommy
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Coarctation of the Aorta
Left Superior Vena Cava
Unroofed Coronary Sinus
Atrial Septal Defect
Elise
10 years old
“Elise is a typical kid, full of life, laughter, and creativity. She loves animals (especially mythical dragons), to draw and create, be with family and friends, and play video games. She has her anxieties, but they usually never keep her down for long.”
Elise has known from an early age that her heart is different from others. We had to
teach her to be more aware of her body so that she could learn how to moderate
herself. To recognize when she needs to take a break so she doesn’t overdo it. She
doesn’t know exactly what is and was wrong with it, just that it doesn’t work like
everyone else’s. When Elise is older and able to understand more, medically speaking, she will learn all about her medical history.
Don’t ever think your mended heart limits you or solely defines you. It makes you
stronger and unique. You have overcome more than you realize and have done so with grace and a smile. Never lose being amazed or delighted in the world and people around you. Never stop wondering, exploring. Overcome fear and doubt so that you will never stop living.
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- Elsie's parents
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Complete Atrioventricular Septal Defect Tetralogy of Fallot
Persistent Left-Sided Superior Vena Cava
Congenital Heart Disease - Did you know?
Structural problems with the heart occur during the early stages of a mother’s pregnancy, when her baby’s heart is forming.
Cora
2 years old
“Strong, brave, and feisty
An attitude not to quit
The heart of a warrior
And the scars to prove it”
-a poem by Cora’s mom”
CHD has taught us to be more grateful and appreciative of everyday things that others may take for granted. It has taught us to celebrate the small stuff, and try to make the best out of whatever life throws at us.
One strategy we use is to take it day by day. During the rough times it’s helpful to just focus on the immediate (the next hour, afternoon, day, etc.) rather than getting caught up in all the “what if’s” of the future. When things are stable we think more about the future, but try to stay flexible and know that things can always change.
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- Cora's parents
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Tetralogy of Fallot
Pulmonary Atresia
Major Aortopulmonary Collateral Arteries (MAPCAs)
Colton
6 years old
“You might have half a heart, but your heart is perfect.”
Colton is loving, goofy and energetic. He loves animals and wants to be a bull riding veterinarian when he grows up. I tell Colton he can do anything he wants to do. One time he said back to me “I can’t run as fast as my friends.” I told him “You just keep running and you will finish the race. You don’t have to be first, just do your best.” I always tell him how proud we are of him for being so brave.
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- Colton's Mommy
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Hypoplastic Left Heart Syndrome
Finleigh
19 months old
“Finleigh is adventurous, sassy and brave. I have never met someone as brave as she is.”
After finding out about Finleigh’s diagnosis my husband and I felt very alone. We had been given information with regards to different parent groups and such, but we really wanted to let the storm settle before stepping into sharing our story. Once being in the hospital we found that there were so many different organizations that came to support our family, which made us feel like we were a part of another family and every one had their own story that we could also relate to. We want to be able to be that family that someone can relate to. We are ready to share Finleigh’s story and be there for a family who may need us.
Process everything on your own time. Do not be afraid to tell people your story and accept the resources when offered. You may not be ready at the time, but one day you may want to be able to relate to people who may be going through the same thing as you.
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- Finleigh's parents
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Ventricular Septal Defect
Coarctation of the Aorta
Congenital Heart Disease - Did you know?
Caring for children with heart defects is a challenging and complex endeavor that causes emotional and financial stress for families, and requires many hospital resources.
Fei
12 years old
“Fei is a true creative - she just sees what can be done artistically and is able to execute that vision organically. She is a kind and old soul. Quiet and focused, yet up for a fun time anytime!”
We adopted her at 2 1/2 years old. Her diagnosis at the time was un-repaired Tetralogy of Fallot. After coming to the US, she was also diagnosed with a rare heart defect - Scimitar Syndrome. To have both defects was especially unusual. There was much debate on whether to repair both in one surgery or in two separate ones. We went with the opinion of her wonderful surgeon, Dr. Richard Jonas at Children's National Medical Hospital in DC. He was able to repair both defects (along with an interventional cath by Dr. Joshua Kanter). She has done well ever since! Though, she has needed two pulmonary valve replacements and one ablation - still thriving.
We participated to share Fei's story so it might be a support to others. Many of the stories are of younger children. We thought it might be neat to hear the story of a child years after initial repairs, who, despite the need for continuing interventions, is thriving.
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- Fei's parents
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Tetralogy of Fallot
Scimitar Syndrome,
Artificial Pulmonary Valve (2x)
Ella
2 weeks old
“Ella was a fighter. She fought from before she was born and she fought harder in her 15 days of life than most people have to fight in their entire, much longer, lives. We were blessed to have the time with her that we did. She has forever changed us.”
I participate in Zipperstrong, selfishly, because I love the idea of having a meaningful picture of Ella and her younger sister, Sloane, but also, because, even though it’s difficult, this is a side of CHD that needs to be shared. CHD is the most common birth defect, yet it’s a world that so few people know about. It’s a world that is entirely too underfunded when it comes to research. The more we can share all types of CHD stories and show people outside this community that there is more to the story than “that kid down the block who had a hole in his heart but he’s just fine now” the greater chance we have of moving towards more life-changing procedures and funding more groundbreaking research.
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- Ella's mommy
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Hypoplastic Left Heart Syndrome
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Ella's little sister poses with her.
Congenital Heart Disease - Did you know?
About 75% of babies born with a critical CHD are expected to survive to one year of age. About 69% of babies born with critical CHDs are expected to survive to 18 years of age.
Special Thanks to:
The 2022 Zipperstrong Project is sponsored by:
View select Zipperstrong portraits on display this February at:
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Children's National Hospital, Washington, D.C.
Inova L. J. Murphy Children's Hospital, Falls Church, Virginia
Johns Hopkins Children's Center, Baltimore, MD
University of Virginia Children's Hospital, Charlottesville, VA
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CHD Facts for this page sourced from:
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2022 Heart Disease & Stroke Statistical Update Fact Sheet Congenital Cardiovascular Defects, American Heart Association
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Get the Facts About Congenital Heart Disease, Children's Hospital Of Philadelphia
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Data and Statistics on Congenital Heart Defects, Centers for Disease Control and Prevention
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Learn more about Congenital Heart Disease:
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CHD Illustrations & Related Surgeries, New Media Center of the University of Basel
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CHD Facts & Statistics, Conquering CHD
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Congenital Heart Defects FAQ, Congenital Heart Public Health Consortium
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Congenital Heart Defects & Critical CHDs, March of Dimes
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Congenital Heart Defects; Know the Facts, Congenital Heart Public Health Consortium
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Acknowledgments
Once again, the pandemic challenged our ability to host the photoshoot and, once again, we rose to the challenge and brought 10 families together safely to raise awareness of the most common birth defect, connect with one another, and share their stories. Each one of them has touched our hearts. We have all struggled throughout the pandemic, but we know it’s been particularly hard on our Zipperstrong families, many of whom have had to navigate diagnoses, care decisions, surgeries, and hospital stays without a village of support. Not to mention the added stress of keeping our high-risk heart warriors healthy and save from COVID. This reality is echoed in the stories of this year’s Zipperstrong Project, and in so many more not told through this project. If ever CHD warriors and their families are being asked to stretch their endurance, it’s now. We see you, heart families.
We are grateful to our friends at Conquering CHD Virginia for sponsoring this year’s Zipperstrong campaign, and for their partnership over the years. If you are not familiar with Conquering CHD Virginia, we encourage you to check them out. They offer an incredible local support network for all impacted by CHD, and provide tools to educate and empower heart families and patients over the lifespan. The organization is growing and we are so proud of their work.
Finally, to our founder, SheRae Hunter, for whom Zipperstrong would not be possible. Her vision all those years ago still resonates and is the inspiration for what is next for The Zipperstrong Project.
“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.”