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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.”
“Strength does not come from physical capacity. It comes from an indomitable will.” —Gandhi
When you are born into a world with the odds stacked against you, you have two ways of looking at it: you can either let it consume you, or face it head on.
My story begins at seven days old, when I was diagnosed with a congenital heart defect called Hypoplastic Left Heart Syndrome. HLHS is a lethal malformation of the heart where the left side is so severely underdeveloped that it does not function. My parents were told that the chances of me having a good quality of life were so slim that it was suggested my parents go the route of compassionate care and let me die peacefully. My parents did not accept that option. They looked for other options and found Children’s Hospital of Philadelphia performing a set of experimental, open-heart surgeries that would re-route my circulatory system, so my body could function with only the right side of my heart. I was born in upstate NY, so Philadelphia was not too far away. I was immediately taken to Philadelphia and underwent my first open-heart surgery, called the Norwood, at nine days old. I underwent the hemi-fontan at seven months old and my fontan at 13 months old. After my family and doctors thought I was out of the woods, I went into congestive heart failure at two-and-a-half-years old and underwent my fourth open-heart surgery to open my ASD. After that, it was full steam ahead. My parents were originally told that they should channel my energies into the arts because the likelihood I would be able to participate in sports with half of a heart was very slim. My surgeon had told my parents to let me set my own limits and that is just what they did.
I began gymnastics at three-and-a-half-years old after asking my mom if I could start classes. After my parents had a conversation with my surgeon on the risks, I began training and continued on as a high level competitive gymnast for 14 years. After suffering a career-ending injury, I turned to high school sports to fulfill my competitive nature. I never considered my heart a handicap. I played high school soccer, track and field, ski racing, and participated in freestyle skiing. I have always enjoyed pushing the limits and exceeding what doctors thought I had been capable of. I kept reaching milestones and my heart was at “rock star” function as the cardiologists liked to say.
May of 2015, I was at lunch with my father at the root beer Stand off Kemper Road in Cincinnati when all of the sudden I lost feeling on my right side, and actually bit my hand on accident while eating. I looked ahead and saw everything swirling and as I turned to my dad I lost the ability to form words. I looked him straight in the eyes, with fear in my own, as I was just babbling like a baby. It didn’t take long to for me to be able to speak again but I had known what just happened. I just had a stroke. I was rushed to the hospital where it was confirmed. Just a few days prior I was studying calculus and now I was no longer able to do simple math. This was my biggest moment of reflection that I had ever had in my life. It took almost a year to begin feeling back to “Meghan.” The confidence and faith I had in myself was tested every step of the way.
As I write this, at 24 years old, I am just about to start back up at University of Cincinnati, studying Neuroscience. Along with my bachelors, I am also undergoing classes to get my phlebotomy certificate by January. As for work, I am coaching where I used to train at Cincinnati Gymnastics Academy as the team level four, floor coach. Aside from coaching, I am a patient advocate and focus on the needs in cardiac transitional care. I travel and speak at different events and medical conferences on the patient perspective of hospital care, as well as the importance of self-advocacy. I am seen at CCHMC yearly in the ACHD clinic, however, I usually end up in the ER a few times a year aside from my one visit. My cardiologist is Dr. Gruschen Veldtman.
Throughout my life, I have had the opportunity to have a multitude of moments of reflection after being faced with the constant reality of death. For my entire life, hospitalizations, cardiac procedures, doctor’s visits, and numerous tests have been a big part of my life. I have had moments where I am scared I won’t walk out of the hospital, or that this will be the cardiology visit where they tell me that my heart is failing.
“It is very easy to make my heart my identity, but it is not. My heart defect and strokes are a part of what makes me who I am; it is not all that I am. However, I am grateful for these experiences because I feel I truly understand the meaning of life and really living. To me, quality of life is not determined by your physical ability, it is determined by how you choose to live your life.”
I choose to live my life by jumping out of airplanes and taking cross-country road trips with only 36 hours of planning time. I choose to drive to Colorado by myself just to do a backflip off a ski jump. I choose to move to Oregon for a summer where I don’t know anyone just to spend my summer skiing. I choose to live a life full of taken-opportunities instead of missed chances. I choose to feel the adrenaline pumping through my veins because I want to experience life and redefine what quality of life truly is.
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My name is Lindsey Greiwe and I was born May 3, 1993. I was diagnosed with Tricuspid Atresia ASD and VSD. The best way I can describe to you my heart condition is I have half a heart. My right side of the heart is connected to the left side, for it to do all the work (kind of like a reptile heart). I wasn’t supposed to live when I was an infant. The doctors told my mother and father that if they wanted to baptize their daughter they should do it now. The doctors explained to my parents I would most likely not be alive by morning, and that’s how I became my parents “Miracle Baby.” After they baptized me that night, my stats miraculously went up and I became stable.
Don’t get me wrong, I’ve had to deal with all kinds of surgeries with my heart growing up, but I have my family and God to thank for the reason I have been so positive with my condition and grateful each day. My parents never let my heart condition get in the way of my dreams. I come from a family who loves sports; I played every sport and never made up an excuse with my heart condition. My father coached me through most of my life and I remember one practice in particular that I’ll never forget. He said, “Heart problem or no heart problem, don’t make excuses in life, and don’t let your challenges in life hold you back.” I’ll never forget that lesson and from there I never once made an excuse for my heart condition and acted like it wasn’t even there. I played sports and never once complained, making coaches sometimes unknowledgeable that I even had a heart condition.
At the age of 20, I went into heart failure, and was diagnosed with diastolic dysfunction of the heart. This was a very hard setback for me at the time. Doctors explained to me I could no longer be that athlete that pushed through the pain no matter what. I had to accept that I had limits now, and if I didn’t follow these limitations that I would put myself right back into heart failure by exceeding a certain heart rate. I was devastated and never thought I’d be as “athletic” in my mind again. However, I simply remembered what my father and mother taught me about when faced with challenges and not to let them set me back. The journey to recover was underway.
As I write this, I am 22 years old, and finally “normal” in my own thinking, when it comes to my heart problem. I worked up to doing 20-30 minutes on the elliptical and almost 20 minutes on the treadmill, but not exceeding my limits given to me by my cardio rehab therapists. I ran my first 10k Turkey Day Race this Thanksgiving and finished at 01:33:47.
“I am very proud of myself for how far I have come with my heart and am very grateful for having wonderful role models in my life, to tell me not to let my condition hold me back.”
I am blessed, in a way, that I do have a heart condition. Yeah, I know that sounds weird. But it’s made me face things in life that no one else has truly faced. Don’t get me wrong, if I could have a perfect heart in a second I’d take it. But having my heart condition has taught me that life is so precious, and in just one simple day everything can turn your world upside down. If that happens though, I know I’ll be just fine. And not a lot of people can say that.
My name is Justin. I’m 12 now and I’ve got one funky heart! My mom and sister say I am their Heart Hero and everything I have to go through makes me stronger and will change the outcome of other kids like me. I love my doctors at CCHMC. They have saved my life so many times! It’s almost my favorite place in the world to go — because I am getting help and helping others at the same time.
My diagnosis includes Tricuspid Atresia, D-Transposition of the Great Arteries, VSD, ASD, Mitral Regurgitation, NeoAortic insufficiency, Fontan associated liver disease (Cirrhosis), ADD and, Muscular incoordination. I know this sounds like a lot, but I am rocking my half a heart! All of these diagnoses are related to my complex congenital heart defect. I have had three open-heart surgeries, multiple heart caths, an appendectomy, and a few other surgeries! It has been difficult living with this many medical issues. I spend a lot of time at the hospital and I have to miss school and other fun things because of my heart, but that’s ok because I was born special to help other kids just like me!
My Heart doesn’t define who I am. I love to race, go fishing, ride my quad, camp with my family, and play with my friends, especially Ryder because he doesn’t treat me different. There are many unknowns about my heart defect and cirrhosis, and that makes it a little scary.
“I would like to find a cure for heart defects so other kids don’t have to feel sad their entire lives, and go through all the surgeries I have had to. If I could give my half a heart to save someone, I would because I don’t want them to hurt anymore.”
I hope my story touches your heart, and you do your part to save a heart. Please make a difference!
Brayden was born on March 9th, 2009, and at first appeared to be a completely healthy baby. We soon would hear news that would dramatically change that.
A few hours after he was born, we learned that Brayden was born with Hypoplastic Left Heart Syndrome (HLHS), Atrioventricular Septal Defect (AVSD), Total Anomalous Pulmonary Venous Return (TAPVR), Pulmonary Atresia and Heterotaxy. The early days of Brayden’s life were the most terrifying moments in our lives as parents. Brayden soon was given the nickname, “Brayden The Fearless” by his grandpa (Papa), after Brayden underwent countless surgeries and procedures masterfully performed by the incredible surgeons and doctors at CCHMC. There was nowhere better for our ‘Fearless’ to be.
Brayden has had a BT Shunt procedure, Glen procedure, Fontan procedure, numerous heart catheterizations, has had Tachycardia attacks, and most recently an Electrophysiology (EP) test heart catheterization, and Ablation procedure to correct the Tachycardia. Brayden’s spirit is incredibly strong and he has healed stronger after each procedure.
The road hasn’t always been easy for Brayden, though. He has had a few setbacks here and there. Some of these have been quite serious, and due to complications with his healing process. Others are due entirely to his unique diagnosis. But Brayden has never allowed any of these moments to hold him back.
Brayden is now in grade-school and plays t-ball, loves being outdoors, playing in the park, playing tag with his friends, and hide-and-seek with his younger sister. Although he has many hurdles yet to overcome, he is choosing to be defined by his Papa’s nickname for him, ‘Brayden The Fearless,’ rather than by a diagnosis.
During a routine doctor visit on March 9th of 2012, we were told that we might have some health issues with the baby we were expecting in July, 2012. We were informed that there might be a number of issues after his/her arrival.
Our family received our little blessing, Annie, on June 15th and we received confirmation shortly after her birth that she did, in fact, have a number of issues with her little heart (which ultimately required corrective surgery a little over 1 year ago). Annie was diagnosed with Atrial Septal Defect (A.S.D.) and Ventrical Septal Defect (V.S.D.), along with a Cleft Mitral Valve on the left side of her heart (which regulates the proper blood flow within the heart). She was later diagnosed with regurgitation with her tricuspid valve, which is located on the right side of her heart.
She had her first open-heart surgery at a year and a half of age. She recovered remarkably fast. As I write this, she is now two-and-a-half-years old and is a beautiful little girl. We still have our daily struggles of OT, PT, speech, and feeding, but she loves to play with her two older brothers and does not have a problem standing up for herself and telling everyone “mo” (“no”). There’s more than likely another surgery in her future, but we will cross that bridge when we come to it. Right now, we are enjoying every moment and accomplishment she makes – no matter how big or small. She has a smile and a laugh that just lights up the room. The doctor appointments and echocardiograms will follow her for the rest of her life, but she is full of life thanks to many at CCHMC and other fine organizations supporting our family.
I’ve never let anything stop me before. I’ve battled my boat, the weather, and my partners, and I always come out on top. I end up at a lake, casting a line, and enjoying life. No ten-pound weight limit is going to keep me from fishing. I’ll design a new tackle box. I’ll cut out the fabric; I’ll combine packages; I’ll downsize my baits; I’ll make this tackle box weigh 9.98 pounds, and I’m going to go fishing. I’m going to fish until I can’t fish anymore, and then, I’m going to enter the Rocky Fork Lake Fishing Tournament, the one my cardiologist, Dr. Kimball, says I will never be able to fish. I’m not giving up.
“My first open-heart surgery takes place when I am only five months old. My pulmonary valve is replaced, and a hole in the muscle of my heart is patched up. I recover very well, and go on living my life like an ordinary kid. But as I grow, my valve grows differently, and at age seventeen I am told that I need a second surgery. I will be in the hospital for a week, and out of commission for at least six weeks. I know that it has to be done, but all I can think is, how am I going to survive for six weeks without fishing?”
We set the date for May 21st. This works in my favor in many ways. I can take my finals a little bit early and not miss much school from the surgery. Plus, I can compete in a fishing tournament on May 5th, no problem. But there is one thing that I can’t accept. Three weeks after the surgery, the Rocky Fork Lake Fishing Tournament is scheduled, and Dr. Kimball insists that I‘m not going to be able to fish it. He empathetically says, “I’m sorry, Gabe, but you don’t have a good chance of recovering in time,” but all I hear in my head is, “Gabe, you have a chance of recovering in time.” If I am going to do this, I have to buckle down, and work hard.
I spend the night before my surgery designing a new tackle box. After the operation, I will have a ten-pound weight limit, and my current tackle box weighs about forty-five pounds. I remove only the bare essentials, and put them in a small backpack. I weigh the backpack, and see 13.27 pounds. I resort to drastic measures. Pulling out my knife, I cut away all the unnecessary fabric from this backpack. I take several packages of soft plastics and start cramming them into one package. I even take out my bigger, four-inch square, bill crank baits, and replace them with two-inchers. Weighing the box again, I see 9.98 pounds. Jackpot! Now I’m ready to have surgery.
I wake up on May 21st after six hours on the operating table, and I am exhausted. I see my parents at my bedside and I ask, “Is it over already?” All my ribs have been cut open, and it feels like a thousand tiny needles are stabbing me in the chest every time I move. I am so thirsty, but I am only allowed to have a few measly ice chips. I can tell that this is not gonna be easy.
Three brutal weeks of bed rest, pain killers, and breathing tubes all comes down to this one moment. My jaw hits the floor when I walk into Dr. Kimball’s office and hear four sweet words. “Gabe, you can fish.” Even though he only allows me to fish four hours of the eight-hour tournament, I catch three bass, including one big kicker with my trademark Roboworm. With a final weight of 4.46 pounds, I win the tournament. A satisfied smile spreads across my face as I release my winning bass and place my lure back into my new tackle box.
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.