#Zipperstrong21
Nola
1 Year Old
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Sweet and feisty, loves to explore new places and is happiest with a breeze blowing through her hair. Despite any struggle, illness, or fight Nola has faced, she continues to smile and bring joy to others
Third-degree Heart Block, Heart Transplant
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"I wish people understood how common CHD is; it can truly happen to anyone. And despite the scars being hidden, it is something that children and families will have to face for their entire lives.
I didn't realize how much we would grow as Nola's advocates and how much we would learn. When we received her diagnosis, I wish I had the foresight to know her life would not be defined by her diagnosis, but rather by the beautiful memories we make each day."
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~ Nola's Mommy
#zipperstrong2021
Noah
11 Years Old
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Noah is funny and always wants to tell jokes. He loves his family and his friends and has a thirst for knowledge.
Atrial Septal Defect (ASD)
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"Noah is a fighter. He is not intimidated by anything or anyone, even though he is much smaller than most kids his age. He has been through so much in his 11 years on this earth and he handles it so well. He accepts things for how they are and never feels sorry for himself.
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We were devastated when we learned of Noah's heart defect, but as we have learned more about CHD and met children and families of those affected by, we have learned to embrace how special Noah really is. He is 1 in 10,000.
I follow Noah's lead. If he isn't worried or fearful, I can't be. Being worried about the uncertainty of the future is normal but don't let it rob you of the present or you will miss out on so many great things. Tomorrow is never promised, whether you have CHD or not, so live today to the fullest."
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~ Noah's Mommy
#zipperstrong2021
Oakley
15 Months Old
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Oakley is a kid who knows what he wants. His feisty personality shines through as does his resilience and strength.
Atrial Septal Defect (ASD) and Scimitar Syndrome (Sometimes called Partial/Total Anomalous Pulmonary Venous Return, or TARVR/PAPVR)
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"One thing I'd like people to know about CHD is to give that family going through that diagnosis as much grace, empathy and compassion as you can. Everyone copes with things differently and you truly don't know or can't judge how someone is handling something until you've lived it.
The hardest part is the unknowns. We know Oakley will need surgery again someday and although we know what to expect, we also know it will never get any easier.
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2020, as hard as it's been with Oakley's surgery and in the midst of a pandemic, has been a bit of a blessing in disguise in a way. It's almost every heart mom's dream for everyone to wear masks and sanitize - as strange as it all still is!
We made so many wonderful memories in 2020 and the hard times definitely showed us what we were capable of enduring. It made all the positives that much sweeter. We love our heart warrior Oakley and the strength he's helped us all find!"
~ Oakley's Mommy
#zipperstrong2021
Isa
7 Years Old
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Always smiling and the most sympathetic child. She wants to help others and make sure everyone in the room is okay.
Hypoplastic Left Heart Syndrome (HLHS)
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"In the beginning, it was hard not not knowing what a congenital heart defect was or what the future would bring. It was scary and heart breaking to know our baby would need surgery and possibly not make it.
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My advice to newly diagnosed families is communicate how you are feeling with your partner, find local parent support groups, and to take each day at a time - it's a long journey."
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~ Isa's Mommy
#zipperstrong2021
Sloane
1 Year Old
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Willful, spunky, and determined. She has handled all she has been dealt with a
grace that feels as though it comes from a higher, deeper place.
Hypoplastic Left Heart Syndrome (HLHS)
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"Every day I look at a beautiful, absurdly happy girl that happens to have an incredibly bad heart and prognosis; the dichotomy is jarring...
There is no 'fix' to CHD. I know so many people are well-intentioned and want to be optimistic, but this kind of pollyanna approach deeply annoys me. The reality is our journey is a hard one and what my daughter has to face and how she will make peace with it is inconceivable to me. I pray this is something she wrestles with because if she wrestles with it, it means she's still alive.
The not knowing is [the worst]. It's like living with a bomb and, like anything, because you have to live with it, you start to normalize it. You have to. It's very Dr. Strangelove.
[When] I first became aware of the [Zipperstrong] project and saw the beautiful portraits, I would stare at these kids and think, my daughter will be one of you, and they, in turn, would stare back at me and their image would reassure me that all was not lost and dark on the road ahead. That this baby I was carrying would be so much more than her defects, just as these kids are. They are hope personified and that hope very much carried me through the rest of the pregnancy and helped to calm my mind."
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~ Sloane's Mommy
#zipperstrong2021
Isha
Heart Mom & CHD Patient
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Growing up CHD was the party trick of my life. "I was born with a hole in my heart." I would announce. It's dramatic.
Ventricular Septal Defect (VSD)
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"[I remember] waiting with my hiding smile every time I see a new doctor for them to pause from listening to my heart and ask 'Have you always had a murmur?' Yes, always. I've always been a girl with CHD, but it was never a big deal to me. My zipper scar was as much a normal part of my body as my belly button. My parents told many wonderful terrible stories about what my first two years were like, but at age two I had open heart surgery and that was that.
It was because of this that the first emotion I felt at Serafina's 23 week in-utero diagnosis was not fear, but anger. I was angry because I felt that I had been lied to. Betrayed by every doctor who had told me I would never have to worry about my children inheriting my heart defect, that it was a fluke, an aberration. 'They probably were wrong to tell you that.' the prenatal cardiologist gently told me.
Still, the idea of a baby with CHD was not as devastating as it might have been for a person without CHD themselves. I felt like I knew what it meant to have a heart baby, and I really did believe CHD was something we could conquer."
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~ Serafina's Mommy
#zipperstrong2021
Serafina
8 Months Old
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A joyful girl who recently started bringing her hands together to sign that she wants more "nose bops"
Truncus Arteriosus (TA), Ventricular Septal Defect (VSD), Pulmonary Stenosis with Pseudoaneurysm
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"Serafina's heart defect is more complex than my own, and her medical journey has ended up being much more difficult. The hardest part of her journey for me was her tracheostomy. This child with tubes coming out of her throat was no longer simply a heart baby. She was a complex medical baby and I did not have any understanding of what that might look like for our lives.
In that moment of decision, in that conference room surrounded by a very serious team of professionals, I imagined a life so difficult and different from our current way of being that I could not fathom how we could ever manage it. And yet here we are, just a few months later, managing, laughing, loving, crying, living.
It's as bad as I had feared it would be, but there is more to it than that. There is an immense feeling of accomplishment in knowing how many of my own limitations I have overcome in order to bring my daughter beyond hers. I see her growing, thriving, and connecting with the world. Now I feel like it's no longer a party trick: We really are amazing."
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~ Serafina's Mommy
#zipperstrong2021
Waylen
4 Years Old
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Loves the outside, mud and trucks and going on adventures. He never meets a stranger - just ask him to tell you a joke.
Ventricular Septal Defect (VSD), Atrial Septal Defect (ASD), Aortic Stenosis, Pulmonary Stenosis, Scimitar Syndrome, Borderline HLHS
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"We participate in Zipperstrong to put a spotlight on another CHD hero, our hero. Waylen has been through so much, he deserves to have his story heard. They all deserve to have their stories heard.
There are so many things I want people to understand about CHD, but one thing that stands out is that CHD is lifelong; it is not curable. These hearts can be repaired, but they are not 'fixed.'
My advice to other families is to breath. Take it one day at a time. Be patient and allow your child to heal at their own pace. There will be good days and bad days. On the bad days pray and lean on family and friends for support. That's what they're there for.
Always advocate for your child. You know your child best."
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~ Waylen's Mommy
#zipperstrong2021
Evelyn
3 Years Old
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Evelyn loved people, she loved her mom and dad and absolutely adored her siblings.
She loved life, and was full of a bright light that I have never seen before.
Trisomy 18, Double Outlet Right Ventricle, Hypoplastic Left Heart Syndrome variant & severe pulmonary stenosis
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"When I was 20 weeks pregnant...the sonographer told us she could not see all 4 chambers of the baby's heart, and we needed to go to a Maternal Fetal Center for more imaging. This and a slew of other tests led to the discovering that our daughter had a very rare genetic disorder, known as Trisomy 18, this alone was enough for many to label Evelyn as 'incompatible with life' with statistics showing that at the time, 90% of children with this condition would die before their first birthday.
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Our baby girl thrived because she didn't know she was sick, she lived just like the rest of us. Evelyn alone made me proud of her. Everything about her. Her fight to live. Her drive to strengthen her body and push to do different things. Her joy of LIFE and love of being alive. It's like Evelyn knew something that many of us don't, every day of life is a gift, and she proved that every single moment. She made and continues to make me the proudest mama in the world.
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I draw my hope believing I will see Evelyn again one day. We all will die one day, it is just a fact of life. And I am confident when my time comes, I will be reunited with my daughter, healed and whole."
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~ Evelyn's Mommy
#zipperstrong2021
Cora Joy
4 Months Old
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Absolutely adores her older brother, loves squirming and wiggling to music, waving hello,
and clapping for herself whenever she rolls to her tummy and back.
Tricuspid Atresia (TA), Hypoplastic Right Ventricle (HRHS), and severe Mitral Valve Regurgitation (MV)
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"After all that she has been through, she still has such a positive and happy disposition...her grit and determination will undoubtedly help her to achieve whatever she puts that stubborn little mind to.
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We will always reinforce to Cora that she can pursue, and accomplish, whatever she wishes. CHD isn't a result of anything gone wrong, or a punishment. God has a very special story for her life and has given her a unique pen to author that story. While her path will be different than the 'normal,' she will be able to use her faith, experiences, and relationships developed with other heart warriors to overcome any challenges that stand in her way.
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There is no sugar-coating, it will be tiring and stressful, but it makes it all worth it to see their smile, hear their laugh, and get one of those sloppy, drool-filled kisses on the cheek."
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~ Cora Joy's Daddy
#zipperstrong2021
Caleb
7 Years Old
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He is a wonderful, passionate, goofy, energetic boy. He loves playing and watching sports,
and wrestling with his brothers. He is also a twin!
Hypoplastic Left Heart Syndrome (HLHS)
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"We are most proud of his resilient personality and spirit, much of which helped him get through his time recovering in the hospital.
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We teach Caleb about his CHD diagnosis by telling him that his heart is unique and special. He knows that as a baby he was very sick and needed to have surgery to make his heart stronger. We tell him how proud we are of him being so brave and celebrate his zipper scar as a memory of all that God and his wonderful medical team have carried him through. When preparing for a procedure, we remind him that when we pray and give our worries to God, He gives us peace and we can trust in His plan for us"
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~ Caleb's Mommy
#zipperstrong2021
Rhett
15 Months Old
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Doesn't let anything stop him. He's so resilient! Even with all he has endured
and with all his medical issues, he's a normal little boy.
Large Inlet Ventricular Septal Defect (VSD), Atrial Septal Defect (ASD), Dextrocardia, Pulmonary Atresia (PA), and L-Transposition of the Great Arteries (L-TGA)
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"Throughout this journey, one of the hardest things was to care for Rhett, we had to be away from our first born. She was only a year-and-a-half-old. That's the time they grasp onto things so well and start being who they are and we missed a lot of it.
Trying to explain the hardest points seems so easy now but when you're in that moment of time, the world turns so slow. I don’t believe there is just one hardest part.
The most heartfelt thing someone has done for us was set up donations for our family so we wouldn't have to struggle financially with the unknown of when I could return to work. It was a blessing. We wouldn't have been able to make it without them. I hope one day I can return the favor to someone."
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~ Rhett's Mommy
#zipperstrong2021
Ellis
2 Years Old
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A ray of sunshine...thriving, precocious, fearless toddler, who loves anything his older brothers are doing.
He loudly proclaims his displeasure when they do 'big kid things' he isn't allowed to join.
Tetralogy of Fallot (ToF)
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"After the fortune of two healthy pregnancies, Ellis' diagnosis shook me to my core. The fear I felt leading up to his birth is something I would never wish on anyone. But I also have a new perspective on life and what is most important. I am more present with all of my children, and every milestone with Ellis feels like cause for celebration.
A CHD diagnosis comes with a lot of angst, so having a care team who takes their time when meeting with you and who you can lean on with every question and concern is so important.
The road is scary, but the CHD community is so loving and supportive and strong. Connecting with and having the support of heart families that have been through birth, surgeries, hospitalizations, loss, is immeasurably powerful."
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~ Ellis' Mommy
#zipperstrong2021
Presented in collaboration with Conquering CHD - Virginia
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Images above courtesy ofConquering CHD.
Surgery is not a cure. Today, there are more adults living with congenital heart disease (CHD) than ever before. It is a life-long disease, yet fewer than 10 percent of CHD adults are getting the specialized follow-up care they need. Ask the CHD adult in your life if they are keeping up with a CHD specialist. If you are the CHD adult, please stay in care!
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View select Zipperstrong portraits on display this February at:
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Children's National Medical Center, Washington, D.C.
Inova Children's Hospital, Falls Church, Virginia
University of Virginia Children's Hospital, Charlottesville, VA
Children's Hospital of The King's Daughters (CHKD), Norfolk, Virginia