Inspiring Stories

When did you start to get involved with the Congenital Heart Alliance of Cincinnati?

I got involved with the CHAoC when after my son Levi’s second open-heart surgery in January of 2023.

Can you share with us your heart hero journey? 

My heart journey started after my twins Levi and Lane were born.  Levi was born with Dextrocardia, meaning his heart is in the right side of his chest (very rare), Transposition of the Great Arteries, a few VSDs (holes), Pulmonary Stenosis, and Superior-Inferior Ventricles. He has had 2 open-heart surgeries and 1 Cath procedure. After his second OHS, he was able to come off of room oxygen.

Lane was diagnosed a few days before their 1st birthday with an Idiopathic 2:1 AV Block. His pulse sits right around 57 and that’s his new “normal”. He may require a pacemaker if he begins showing symptoms or if his pulse gets any lower.

Both boys are THRIVING now thanks to research, technology, our amazing team at Cincinnati Children’s, and the giant village of the CHD Community! ♥️♥️

What is your favorite way to connect with the Heart Community? Are there events that you have attended recently that you have enjoyed?

My favorite time of the year is Fall and I truly love being able to attend the pumpkin patch locations such as Burwinkel Farms! A close second would be zoo days and the Festival of Lights!

The heart community has been truly amazing!! From the heart walks, to the free events for heart families, to the gifts for the inpatient families, to being able to vent and listen, and everything in between. Funny story, I sell Scentsy along with someone named Jackie Crawford who is also in this group. She was buying Scentsy off of me one time when I noticed her profile picture said something about her son being a heart warrior. I messaged her and asked about her son’s diagnosis. Fast forward to my son Levi’s first open-heart surgery, Jackie drove all the way to Cincinnati Children’s with a giant box of snacks for us, stuffed animals for both Levi and his twin brother Lane, McDonald’s for us for dinner, outfits for the boys, a large DoorDash gift card, and tons of other goodies.

I barely knew her at this point. She told me how it’s nice to have a village to support you in those difficult times. Now Jackie and I are very close and I still can’t thank her enough for everything she did for us and continues to do for us! That’s just one example of how the heart community goes above and beyond to show their love and support for each other.

For new parents and family members just starting their journey with a CHD, do you have any advice for them that you would like to share?

I could go on and on about this. 1. Advocate for your child. You know what’s best for them. I know it’s scary and confusing at first, but feel free to ask questions. If something seems off in your child, alert the nurse. Fight for them and for you. Educate yourself if you can and really learn about your child’s diagnosis. 2. Reach out. It’s extremely traumatizing to go through this. Vent. We are all here to listen and can relate to your feelings. I still cry randomly just thinking about how far my son Levi has come. Happy and sad/scared tears are normal throughout this journey. We are all your village and would love to help you out!

What is your favorite summer activity you like to do with your family?

Swimming and eating ice cream!

When did you start to get involved with the Congenital Heart Alliance of Cincinnati?

I became involved when I was pregnant with my son and learned about his heart defects. I wanted to find a community who understood the world I was being thrown into and could help me navigate all the ups and downs along the way.

Can you share with us your heart hero journey? 

Our son, Owen, was born with aortic stenosis, a unicuspid aortic valve, and coarctation of the aorta. He was transferred to Cincinnati Children’s CICU right after he was born and had his first heart catheter procedure at 2 days old. After an up and down recovery, he came home only to find out a few weeks later that he needed a second cath. Thankfully, the second procedure helped and we are currently in a wait and see period before his first open heart surgery.

I have always found hope through learning about stories of others who have experience walking the path through CHD and have enjoyed the connections I’ve formed with other parents in similar situations. It’s so nice to know we aren’t alone, and even better to have support from families locally. I reached out to other parents when I found out about my son’s defects and appreciated the help and guidance I received and I love getting to do the same thing for new families who are just finding out about their child’s CHD.

What is your favorite way to connect with the Heart Community? Are there events that you have attended recently that you have enjoyed?

The February photo shoot was the first CHAoC event we attended and our family had such a great time at our first Heart and Sole walk in August! It was so nice to join together with family and friends while raising money for a cause that is so important to us. I also enjoy the local heart Facebook group and I am thankful for everything I have learned from the parents in that group. I participate in Cincinnati Children’s Heart Institute Patient and Family Advisory Council and find hope learning about all the things being done to improve patient care and outcomes.

For new parents and family members just starting their journey with a CHD, do you have any advice for them that you would like to share?

Reach out to parents who have been in your shoes and don’t be afraid to speak up at appointments with concerns or suggestions. Our cardiologist has been very open to my input as a parent and has gone out of his way to answer any questions I have.

What is your favorite summer activity you like to do with your family?

Our family loves to explore new parks!

When did you start to get involved with the Congenital Heart Alliance of Cincinnati?

We received a care kit when we were in-patient for my daughter’s heart surgery, but I just couldn’t process or handle another thing coming at me during that time. Fast forward several years and we began to get involved with events with Conquering CHD and we found a wonderful community. We were ready to be a part of the Heart family, make connections, raise awareness, and give back however we had capacity. Once the OH chapter of Conquering CHD was disbanded, we migrated over to the CHAOC with our leaders Gina, Bree, and Stephanie.

Can you share with us your heart hero journey? 

There’s not one event or experience that defines our relationship with the Heart Community. It really has been all about the friendships that all four of us have made, and the familiar faces that we see each time we engage with the CHAoC. We have the thread of CHD weaving us together, but it’s a springboard to an overall support system that can help us navigate through anything we face in life. I love seeing the social media posts reaching out for help and the immediate responses with assistance. I also love that we have a group of advocates at Cincinnati Children’s that know our families and truly care about us.

What is your favorite way to connect with the Heart Community? Are there events that you have attended recently that you have enjoyed?

We love any events that involve the Heart Community. We cherish the fact that when we attend these events, we are able to see friends from near and far that we may not have the opportunity to see on a regular basis. It’s a great opportunity to catch up with existing friends and make new connections, and offer support to those just embarking on this journey. We love any event that allows for the kids to have a blast engaging with each other, but simultaneously gives the adults a chance to unwind and talk with one another. The recent Family Night Out at MPH was a great new event, but our favorite event is always the September Heart walk.

For new parents and family members just starting their journey with a CHD, do you have any advice for them that you would like to share?

First of all, we are so fortunate to be located where we are with THE BEST Children’s Hospital in the nation, a great organization like the CHAoC, and the American Heart Association. You are in the right place and we are all here for you!

Secondly, don’t be afraid to reach out. Post your questions on social media or ask the CHAoC leads to connect you with someone who may have a way to support what you need.

Third – please come to events! It is hard to make time for everything given how busy all of our families are, but this is a great community to prioritize getting involved with. The CHAoC leads put A LOT of effort into planning and executing the events, so please show them your appreciation by engaging with posts and coming to events when you are READY to do so, which brings me to my last point.

Finally – you need to do what’s right for you. If you feel overwhelmed with everything going on and don’t feel you are ready to engage, that’s OK! We didn’t get involved right away because we were processing what was happening and just trying to get by one day at a time. However, as time went on, the fog lifted and we were ready to get involved. You will get the most out of the events and information if you are in the right space mentally and emotionally.

What is your favorite summer activity you like to do with your family?

We love traveling and being by water any time we can! We love to try new experiences. This year we went to Red River Gorge for the first time to explore and hike and we can’t wait to go back.

Are there any quotes or mantras that you live by?

“There’s a future me who is glad I never gave up.”
“Difficult roads often lead to beautiful destinations.”
“When you reach the end of your rope, tie a knot in it and hang on!”

When did you start to get involved with the Congenital Heart Alliance of Cincinnati?

We just attended our first CHAoC event and will be a part of it from now on as long as we can!

Can you share with us your heart hero journey? 

Our daughter Scarlett was diagnosed with Complete Heart Block April of 2017. Children with CHB are usually diagnosed at 20weeks in utero but my pregnancy was normal and healthy until I had severe heart burn and a migraine. I told my doctor something was seriously wrong I needed to go to the hospital. When they checked the fetal HR it was 50, when it had been 155, 3 days prior. We had an emergency C section and Scarlett was taken to Cincinnati Children’s Hospital immediately. My doctor asked how I was feeling and I realized my headache and chest pain were gone, he said I don’t think we were here for you I think we were here for her. We were so blessed that God placed us where we needed to be to get Scarlett help immediately. I’m forever grateful for our Savior for protecting her. She did well until 18 months when she had to have open heart surgery and a pacemaker placed. It’s been a roller coaster for us all but she has always been a ray of sunshine. She just has something special about her, as most heart babies do. She’s done so well and now as a 7yr old going into 2nd grade we could not be more proud! We are grateful for the heart community and Cincinnati children’s hospital who has taken such great care of our daughter.

What is your favorite way to connect with the Heart Community? Are there events that you have attended recently that you have enjoyed?

As an RN myself I know that support is so so important to patients and their families. So I try and be a listening ear and supportive to anyone I know going through this Heart journey with their child. We recently signed up for the Scratch Golf golf camp and we are thrilled that we did. I saw my daughter talking with a new friend she made on a break. They showed each other their chest scars and when the other little girl said “I have a pacemaker too!”…Seeing my daughter shocked and say” you do really?!”…I immediately teared up. She had never met another child with a pacer or a heart surgery scar. It was such an amazing moment to watch and it made me realize how important these kind of events are for our children. She’s talked about it almost every day since and can’t wait to do lessons next month! I cannot thank CHAoC enough for this event. For the kindness theyve shown and the fun my family has had. It was a great way for her father and I to connect with her and other parents who just get it. They just know exactly what we’ve gone through and will continue to go through.

For new parents and family members just starting their journey with a CHD, do you have any advice for them that you would like to share?

It’s a roller coaster. It’s not how you imagine the birth of your child going but they were chosen for this moment. Children are SO resilient and strong. Lean on family and friends. Seek out resources as there are SO many for support through the battles you’ll face. Stay off Google it’ll make you go crazy. It’s okay to cry, it’s okay to be angry, but Never lose hope. Never. There’s many days I questioned God’s plan for my daughter because we don’t always understand, but I never lost hope. You have a Heart Warrior now. Your family can do this.

What is your favorite summer activity you like to do with your family?

Every year we go to Topsail Island North Carolina. My husband’s family has gone since he was a child and now we take our children. It’s a time of reconnecting as a family. Taking in the beauty of this world. Walking the beach finding shark teeth, hearing the children laugh and play, listening to the waves. Disconnecting from our phones and social media and just focusing on the most important thing, family.

Are there any quotes or mantras that you live by?

“For God has not given us a spirit of fear, but of power and of love and of a sound mind” (2 Timothy 1:7)

Are there any ways that you are looking to get more involved with the Heart community?

My husband and I have been talking about volunteering and giving other families the love and support we have felt through our journey.

Matthew was born in 1997 and was diagnosed in-utero with a heart defect. Doctors were not quite sure the extent of his heart defect until further testing, upon his birth. When his parents met with the doctors after Matthew’s first ECHO, they were told that they were going to have to describe Matthew’s defect, the best that they understood it to be. This was the first indication that Matthew’s defect was quite unique. No one was sure how Matthew’s health would play out over his first several days of life. Thankfully, he did well and he was able to go home. Over the next couple months, after multiple ECHO’s and a cath, doctors discussed Matthew’s defect and decided on a course of action (which wasn’t easy for them to agree upon). It was decided that Matthew would need two surgeries in the first few years of life. He had the Glenn procedure when he was six months old and the Fontan procedure at two-and-a-half-years old. He did well with both surgeries and his parents were always amazed how quickly he bounced back.

As I write this, Matthew is now preparing for his senior year of high school, nothing short of amazing to his family. He had stayed active through his school years playing soccer and basketball. His doctors have always told him his activities would be self-limiting and Matthew, for the most part, was able to keep up with his friends. He enjoys fishing, video games, and spending time with his friends. His health has stayed steady through the years with a few bumps in the road, but nothing that he hasn’t been able to overcome. Matthew has always been very private about his heart defect and has never used it as an excuse. Just recently, going through TSA at the airport, a TSA agent looked at Matthew and asked him what his bump was on his chest, as he reached out and felt it before any explanation was given. Matthew handled it like a champ and simply stated he had had heart surgery. This is, and always will be, a part of who Matthew is, and his family feels very blessed that he has become the fine, young man that he is.

2024 Update!

Matthew has continued to be a true heart hero, living life to the fullest while navigating the challenges of his condition with unwavering resilience. Keeping up with his medical appointments, he is currently seen in the Single Ventricle Clinic twice a year. These check-ups ensure he remains in optimal health and receive the specialized care he needs.

In addition to managing his health, Matthew maintains a thriving career in the insurance industry, working full-time and excelling in his profession. Excitingly, he is also looking forward to a new chapter in his personal life, as he getting married in 2024!

Matthew’s dedication to his health and fitness shines through his passion for golf and martial arts. These activities not only keep him active but also serve as a source of joy and personal fulfillment. The Heart Hero Golf Classic, in particular, is his favorite event of the year! He is so thankful for the invaluable support that CHAOC provides to the congenital heart community.

Meet Heart Mom and CHAoC Board Member Gina Menninger

What Motivated You to Volunteer Your Time with CHAoC?

When my son, Austin, was born with Hypoplastic Right Heart Syndrome and Tricuspid and Pulmonary Atresia—essentially “half a heart”—our world turned upside down. Navigating those early days was incredibly tough, but we found strength and support in the heart community. The love and encouragement we received during those dark times inspired me to give back. Now, I dedicate my time to the Congenital Heart Alliance of Cincinnati (CHAoC), hoping to provide the same lifeline to others in need.

Volunteering: Bringing the Heart Community Closer Together

Over the past year, my role in community outreach for the Cincinnati area and Cincinnati Children’s Hospital Medical Center (CCHMC) families has been incredibly rewarding. Here are a few highlights of the events I’ve been involved in:

Heart and Sole 5K Walk Fundraiser

Every year, I lead the Heart and Sole 5K walk fundraiser at Miami Whitewater Forest. It’s a day of unity, hope, and celebration, where we raise nearly $30,000 with around 300-350 participants. Seeing so many people come together, sharing their stories and support, reminds me of the power of community. It’s more than just a walk; it’s a statement that no one is alone in their journey.

Holiday Toy Drive

One of my favorite events is our Holiday Toy Drive. We set up giving trees throughout Cincinnati to support CCHMC, and last year, we collected over 1,000 toys. These toys transform into smiles and joy during our toy shop event for inpatient families, who get to choose gifts for their loved ones and enjoy a warm holiday meal. It’s heartwarming to see the light in their eyes and know we’re making a difference during a challenging time.

Year-Round Support and Events

Beyond these major events, I also coordinate various gatherings throughout the year, such as Heart Week, photo shoots, Mother’s Day and Father’s Day events, Mom’s Night Out, Dad’s Night Out, the Summer Picnic, the Heart Hero Fall Festival, and our Holiday Event at the Zoo. Each event is a chance to bring heart families together, fostering connections and shared understanding. We also organize inpatient meals and educational events, ensuring continuous support for those in need.

Getting Involved: Your First Step

For anyone new to the CHAoC and heart community, the first step is simply reaching out. Our website has lots of information about upcoming events, and our Facebook page offers a glimpse into our vibrant community. Attend an event when you’re ready, or start by introducing yourself online. Every bit of involvement helps, whether you’re seeking support or looking to give it.

We always need more hands and hearts! Our biggest upcoming event is the Heart and Sole walk on September 21st at Miami Whitewater Forest from 8-12. It’s a wonderful opportunity to get involved, meet other families, and make a tangible difference.

Keep in mind that volunteering with CHAoC is a family affair! There are plenty of opportunities for kids and adults alike. Host an inpatient dinner at the hospital, organize a kit packing party, or collect toiletries for our care bags. During the holiday season, you can set up a giving tree or toy box to collect toys for our drive. Every act of kindness counts, and it’s a beautiful way to teach children the importance of giving back.

Join Us in Making a Difference

Gina’s journey with the Congenital Heart Alliance of Cincinnati is a testament to the power of community and the impact we can have when we come together. By volunteering your time, you’re not just supporting a cause—you’re changing lives. Join us by emailing info@chaoc.org, and let’s make the heart community stronger, one event at a time.

As the sun rises over the rolling greens, there’s a palpable sense of excitement and camaraderie in the air. This isn’t just another day on the course; it’s the Annual Golf Outing for the Congenital Heart Alliance of Cincinnati, a day that brings together our community, our board, our doctors, and most importantly, our heart kids and their families.

A Journey from Humble Beginnings

When I joined the Board in 2012/13, we didn’t yet have any fund raising events on the golf course. The idea of hosting a golf outing was born from a need to raise awareness and bring our heart community closer together.  The primary goal was to introduce our organization to the community and enhance our marketing efforts. The first few years were about laying the groundwork – developing posters, banners, brochures, and all the materials that would help tell our story.  The heart of this event lies in its ability to bring our mission to life. It’s about community outreach, fostering connections between board members and doctors, and sharing our mission with a broader audience. Over the years, we’ve grown from a small gathering to an anticipated event with over 30 foursomes signing up. Attendees return year after year, not just for the golf but for the sense of community and the fun atmosphere we strive to create.

A Personal Connection

My son Gabe, a heart kid himself, was an avid golfer and a member of the Mason High golf team. With his passion for the game and my familiarity with local courses, it felt natural to plan a golf outing. Gabe also caddied at Heritage during the summers, which allowed me to forge a strong relationship with the golf pro there. This year marks our 8th annual event, a testament to the hard work and dedication of everyone involved.

The Power of Volunteers and Sponsors

Our success is largely due to the incredible team of volunteers who pour their hearts into this event and the sponsors whose generous contributions keep this event going year after year. Sponsorships are crucial for covering event costs and ensuring we can continue to host such a memorable day. When our volunteers prepare for the event, each volunteer has specific roles and responsibilities.  We have everything very organized both leading up to and during the outing, so that our entire volunteer group can function like a well-oiled machine. We are so appreciative of these volunteers and there’s always room for more hands and hearts in this mission!

A Day to Remember

One of the most cherished aspects of the outing is seeing the golfers interact with the heart kids and hearing their stories. The doctors from the Heart Institute love attending, and it’s become a staple on their calendars.

For me, the highlight of the event is the dinner. It’s a time when everyone – board members, golfers, families, and doctors – comes together in a social setting. It’s a moment to reflect on the day’s successes, share stories, and simply enjoy each other’s company.

Whether you’re a long-time supporter or a newcomer, we invite you to join us on the greens. Together, we’re swinging for hearts and making a difference in the lives of so many.

See you on the course!

Zerlina Dubois

President of the Board of Trustees for CHAoC

Stephanie, a devoted mom to a thriving almost 7-year-old daughter, embodies resilience and compassion. Her daughter’s critical congenital heart defect (CHD) diagnosis initially set her into a world of grief and trauma. Navigating through the labyrinth of medical terms and uncertainties, Stephanie found solace in the Heart Community of Cincinnati. This newfound support system of parents sharing similar journeys was a beacon of hope, offering her a sense of belonging and understanding. Today, Stephanie channels her experiences into volunteering with the Congenital Heart Alliance of Cincinnati (CHAoC), striving to ensure that no family faces the CHD journey alone.

From Heartache to Helping Hands: Stephanie‘s Motivation

Stephanie‘s motivation to volunteer with CHAOC is deeply personal. She recalls the relief and comfort she felt upon discovering the Heart Community. The connection with other parents who truly understood her struggles was therapeutic, helping her to cope with her daughter’s diagnosis. “I finally felt heard and not alone,” Stephanie shares. This profound impact inspired her to give back, spreading awareness about CHD and supporting other families navigating similar paths. Through CHAOC, Stephanie found a platform to reach out, educate, and connect with heart families, making a tangible difference in their lives.

Building a Stronger Community: Events and Experiences

In the past year, Stephanie has taken on a leadership role in community outreach for CHAoC. She helped plan the annual golf event and leads the Heart and Sole Walk fundraiser each year. Beyond these major events, Stephanie coordinates a myriad of activities aimed at fostering community spirit and support. From Heart Week and Mother’s Day celebrations to summer picnics and holiday events at the zoo, her efforts bring heart families together, providing much-needed outlets and support networks.

One of her cherished experiences is the Heart Hero Fall Festival, where families gather to celebrate their little heroes in a fun, relaxed setting. She speaks warmly of the connections formed at these events, emphasizing how they strengthen the heart community and offer families a sense of normalcy and joy amidst their challenges.

Getting Involved: A Welcoming Community Awaits

For those new to CHAOC, Stephanie advises starting with a social event or fundraiser to meet other heart families. “If that is too much at first, just reach out and join our online CHD Heart Families of Greater Cincinnati,” she suggests. The organization’s Facebook page and website are rich resources for information and support options, providing a gentle entry point into the community.

Upcoming Events: Join the Heart Family

Stephanie eagerly shares upcoming events where volunteers are needed. The Summer Picnic on June 21 is a perfect opportunity for those wanting to get involved. Volunteers are needed to set up, serve dinner, and clean up, ensuring a smooth and enjoyable experience for all attendees. Looking ahead, the Heart and Sole Walk in September requires a larger volunteer force to assist with various tasks throughout the event.

Additionally, CHAOC frequently organizes kit-packing parties for inpatient kits delivered to the hospital, welcoming families and children to participate. “It’s definitely possible to volunteer as a family,” Stephanie affirms. These opportunities not only contribute to a great cause but also foster a spirit of giving and empathy among children.

Ways to Contribute: Every Effort Counts

For those unable to volunteer time, Stephanie highlights the need for donations, such as toiletries for inpatient kits or toys for the holiday toy drive for CCHMC CICU. Sponsors and volunteers for social and fundraising events are always welcomed, as every contribution helps enhance the support system for heart families.

In Stephanie’s journey, we see the transformation of personal heartache into a mission of hope and community. Her dedication to CHAOC not only uplifts other families but also exemplifies the power of collective support and understanding. Through her efforts, Stephanie ensures that no one walks the CHD journey alone, fostering a resilient and compassionate heart community in Cincinnati.

On December 1st 1985, I was born as a classic ‘blue baby,’ diagnosed shortly after birth with Ebstein’s Anomaly (a defect of the tricuspid valve). Throughout my childhood I was much slower than my peers, becoming cyanotic ‘blue’ and short of breath easily. I had never met anyone else with a heart condition as a child and thought I was meant to be different. Like so many other patients, different was my normal. Although my physical ability was limited, it did not stop me from experiencing life. I credit this to my parents. While overprotective, they also knew if I had my mind set on something I was hard to reason with. So, even though I was always picked last or the worst player of whatever game or sport I was interested in, I still participated (if only to be able to hang out with my friends). Not until I was an adult did I have an appreciation of how significant my heart condition was, and how it will always impact every aspect of my life.

After being fairly ‘normal’ during my childhood and teens, I became symptomatic when I was a senior in high school. I had my first surgery when I was four and did not remember any details. Throughout my life I had been hospitalized several times, undergone a number of caths, and other minor procedures (and I thought this would be all I had to deal with). When I was 18, I found out that my tricuspid valve was failing and the medication I had taken for ten years was not helping me anymore. It was advised that I have another valve replacement. At this point, I was in the middle of classes at art school and had to quit, indefinitely. During the initial surgery I went into complete heart block and had to have a pacemaker placed to keep my heart beating. This time in my life was extremely psychologically difficult. Out of sheer boredom, and to ease the psychological burden, I returned to work two weeks after I was discharged from surgery. Shortly after returning to work, I met the person who is now my husband.

Prior to my surgery, I was informed I would have a bio prosthetic valve originating from a cow. The use of animals in research fascinated me and I wanted to be able to give back to the animal(s) who not only gave me a second chance at life but who service us as research, working, and companion animals. With a push from my then boyfriend (now husband), I redirected my education from photography to veterinary technology.

Fast-forward several years, as I write this I am now 30, I accomplished my intention to work with research animals at Cincinnati Children’s Hospital. I am able to care for aquatic animals, who help researchers discover the genetic aspect of congenital heart defects.

“I am so thankful that I have been able to come full circle and I am able to participate, in some small way, in giving back to the research animals and other patients.”

Between the ages of 18 and 30 I had two more valve replacements and a new pacemaker. During this time, I have found something that has truly helped me through any hard time — my voice. As a very shy, meek child my grandmother asked me recently, “Where did you learn how to speak up?” I credit this to the wonderful heart families I have met who were the first to encourage me and validate that my story mattered. The past seven years I have participated in several congenital heart defect-related, non-profit organizations that have given me the courage to share my story. I have met other patients and families who have not only become close friends but inspire and push me to continue advocating for those with CHDs. Through meeting these beautiful families, I realize how fortunate I am.

Many congenital heart patients lost their battle far too early. I keep a picture of a heart angel, Emily, in my locker at work to remind me on the hardest days, why I come to work, and that I have no excuse to give up. Through my work with several different organizations, I have found a special interest in adult congenital heart defect (ACHD) advocacy. Due to advancements in medicine, treatments, and surgical innovations made possible by research, ACHD has a continuously growing number of patients. There are now more adults living with congenital heart defects than children. Living with CHDs impacts several aspects of an adult’s life. The majority of congenital heart defect-related organizations’ goals are to raise money to support research, which will extend patients’ lives. Once a patient reaches adulthood, there is very little support for them compared to pediatric patients. ACHD patients become lost to care, because they believe, or were told, they were ‘fixed’ as a child. This misconception can be extremely detrimental by dissuading patients to stay in contact with a ACHD specialist.

I work closely with Cincinnati Children’s Hospital ACHD specialists to provide education, peer support, medical referrals/resources, social events, and community outreach opportunities. One of the most crucial types of support is peer-based. Speaking with another patient who has gone through the same struggles and triumphs as you is something that cannot be clinically duplicated. Knowing you are not alone is a truly sustaining comfort. Peer-based support can also encourage patients to seek appropriate medical care by facilitating patient-to-patient referrals. With the help of some awe-inspiring ACHD patients, we have formed a peer-based support and educational program, Adult CHD Survivors of Cincinnati. Our group hosts educational meetings with medical professionals, provides opportunities to socialize, and encourages participation in fundraisers and community events. More recently, we are thankful to partner with the Children’s Heart Association of Cincinnati (renamed Congenital Heart Alliance of Cincinnati in 2020) to be able to support more patients and families. The summer of 2016 marked the first Adult Congenital Heart Disease Patient Camp. Thanks to the CHAoC, in partnership with the Cincinnati Children’s Adolescent and Adult Congenital Heart Disease Clinic, we were able to provide 24 adult patients a day of adventure, education, and the opportunity to meet and socialize with other patients.

If asked if I wish I was born without a congenital heart defect, I would say no. My heart condition has given me first-hand knowledge and the opportunity to serve others. The amazing, courageous, and kind people I have met through my journey, and the opportunities I have had, completely outweigh the struggles and uncertainty I have living with a CHD. Every day I wake up, I am thankful; each new day brings an opportunity to make a difference and to support and love others.

I try not to live through my heart condition — to remember I am not a congenital heart defect patient named Danielle. I am Danielle — someone who happens to have a heart defect. Since my heart condition and I are in it together, I might as well make the most of it.

Meet Callie! She is a smart, confident, energetic, eight-year-old girl who loves laughing with friends, dancing, performing in theatre productions, and playing soccer. To see her today, you would never believe her challenging start. Callie was born without a wall between her left and right ventricle (the two pumping chambers of the heart). She spent many weeks of her first three months of life in the hospital and at doctor appointments, before having her first surgery at three months of age (Glenn Surgery). After that surgery Callie thrived, even though it was known that a second surgery would be necessary around age four (Fontan Surgery) to complete the fix of her congenital heart birth defect. Callie was a champ through her second surgery, thanks to her determination and the amazing and caring staff of Cincinnati Children’s Heart Institute. She likes to tell those who ask her about her open-heart surgery scar that it is part of “her story.” Thanks to the team at CCHMC Callie is living a “happily ever after.”