It would have been very awkward though because my 4 year old was watching. I had just hung up the phone from one of my doctors in regards to yet another organ I now got to see a specialist about, and get tested on, and add more labs to. I felt very defeated in that moment of CHD world, which felt silly because I had been through so much worse.

Growing up with a Congenital Heart Disease is weird. When you are a kid, you don’t really realize that it’s weird. It’s just your life. It’s just your normal. Sure, you know that you are different because of things like scars, medications, restrictions, surgeries, and doctor appointments. Being a kid with CHD is much easier than being an adult with CHD.

Looking at a normal heart is to peer into a colored labyrinth. Follow the maze of red sections, blue sections, black labels, black arrows, atria, arteries, aorta, veins, ventricles, valves. Blood flows in; parts open, and blood flows out. Immaculate chambers work together to separate and circulate the blood.

I always joke that in my next life I am going to come back as a meteorologist. I can be wrong almost every day and still have a job. See, their job is all about chance. Think about it…20% chance of rain, 90% chance of snow…are they ever really right? Thankfully my doctors fell into that category the day I was born. My parents were told that I had a one percent chance of survival. One.

Growing up, children normally have heroes they look up to like Spiderman or Superman, but for me, I was always attracted to the heroine. Some people never get to meet their hero, but I did, and I gave birth to my hero, my heart hero. Our story began in February 2017, when my daughter, Lilyana, was only 4 months old.

When I think about how I have been affected by congenital heart disease, the emotions that come up range from grief to gratefulness with anger and joy all mixed in. My son was born in May of 2018 with Hypoplastic Left Heart Syndrome (HLHS), a rare and severe congenital heart defect that renders the left ventricle unusable. Liam was just 11 days old when he had his first open heart surgery.

We were so excited to find out I was pregnant, we prayed for a name, and we were given the name Trinity.

It was on a Sunday that we brought our precious little girl home from the hospital with a clean bill of health. That next Tuesday we had our first pediatrician’s appointment. It was then that the doctor told us she had a very loud heart murmur, and she was scheduling us to see a pediatric cardiologist.

The bypass surgery was scheduled for November 15th. The surgeon told us that Richard was the type of man he worried about because he had no symptoms. That was the most frightening day of my life. My husband was the picture of health as I kissed him good luck and they rolled him into surgery.

During my recovery from CABGX3 surgery, I found it very difficult to sleep whilst trying to lie on my back all night in the intensive care recovery room. The pain in my throat, the stitches in my ribs, and the general aches all contributed to my discomfort.

Rather than counting sheep, I tried reciting poetry and song lyrics to myself.

My day started out like any other day with my husband driving me to work on his day off. The night before I had some chest pains that I thought were just acid reflux heartburn pains and it had improved the next morning but excruciating pain started when we were halfway there. I could hardly breathe. The pain continued to get worse.

Everybody is born into different walks of life. Some babies are born and have no choice other than to prove their strength at day one. I would like to share my story and journey with my “mended little heart.” In March of 1997, my mother took me to my two-week newborn check up thinking that everything was going to be okay.

I have two experiences with heart warriors. My husbands heart attack and my son's open heart surgery.

January 4th 2013, Brian had his heart attack in the middle of twin city highway when walking to Degraff. He had to be rushed to Buffalo General.

Heart disease is something that you do not think about until it happens to you. You especially don't think about it happening to children. Children who have done nothing but being born. And there it is. And just as a match set to a pool of gas, the reaction is instantaneously and the lasting effect is evident no matter how you look at it.

I haven’t believed in God since I was a teenager, but it was only when I found out that my son was going to be born with a congenital heart defect that I began to confront the consequences.

I became frustrated at not being able to provide answers for why my luck had so suddenly changed, when up until then everything in my life was going quite well. It is easy not to believe in anything when you are living a good life.

A week before our daughter’s birth, we found ourselves in a conference room at the hospital where she would be delivered, in a different state than our own home. We were there for the most difficult meeting of our lives, a meeting with the palliative care team to discuss life support options for our unborn daughter.

Having a child with a congenital heart defect presented both financial and emotional challenges. My son was just leaving the hospital when my six weeks of maternity leave were up. I asked to extend my maternity leave and was fired instead. The medical bills from two back-to-back heart surgeries piled up. It took us four years to get out from under that debt. We knew he would need a third surgery but we didn’t know exactly when he would need it.

When my daughter was 4 years old, her doctor heard a faint clicking sound in her heart at a well-child visit. We discovered she had a bicuspid aortic valve and several other heart defects. She is now 20 and has always been asymptomatic and hasn’t yet needed surgery. Because a bicuspid valve is congenital, her cardiologist suggested that I get screened. That was nine years ago.

At age 77, I’ve survived six heart attacks, quintuple bypass surgery, 10 stent emplacements and too many angioplasties, I had never been visited by a Mended Hearts visitor, much less heard of the organization. The closest chapter to me was an hour away in Goldsboro, N.C., Chapter 194. That all changed after I retired in 1990 from the U. S. Army and a 22-years as an Army Civilian retiring in 2012. Well, I retired from working from the Army and that freed up a lot of time. As a survivor of the open heart surgery in January 2000, it was time to give back to other heart patients.

For most patients, cardiac disease feels like a train wreck. We are unprepared for a shaky landscape of fragile health, medical expenses, career changes, and emotional upsets. We ignored the gentle nudges our bodies gave us like shortness of breath and fatigue. Eventually, our bodies revolted. Enough! Chest pain is the cardiac equivalent of a shot across the bow forcing us to make a choice.

I am so thankful for my heart journey—while at times complex and arduous spanning more than 27 plus years—it has provided so many valuable lessons and positive opportunities that I would otherwise have missed.

I am so thankful that it motivated me to make serious life-style changes—I just turned 70 (surprising me and my doctors!), and continue counting my heart journey blessings every day.

Mark was expected in January but was born on a stormy December night in 1991. The doctors tried to send me home; complaining that, “it was too early”. I said no, I’m staying. I gave birth later on.

Two days went by in the maternity ward. Every time I nursed him, he would stop and gasp for his breath. His big brother had never done that. I mentioned it to the nurse.

As I sit here staring at the machines, tubes, lines, and medications that are keeping you alive, I think of how just a week ago you were safe inside my womb.

I want so badly to hold you, to feed you, and to bond with you. My heart longs to connect with yours, but all I can do is watch your heart monitor closely. I may not be able to snuggle you, but I am watching your every breath. I may not be able to feed you, but I am learning about your medications. I may not be able to take you home, but I am sitting right by your side in this hospital, making it our home for now, loving you in the only ways I can.

I was born early, and rather small, at only 3lb 3oz; I wasn’t very tall. I took my first airplane ride the night I was born when I took a trip with my dad to a NICU. This unexpected entrance into this big world was exactly what we needed in order to know my heart was not working as it should. My heart is unique -it was just as it should be, but needed some adjustments to make it function properly. Over 4 long months my parents worked hard to keep me growing and healthy. Ready or not, the big day would come, but open heart surgery would prove to be the Mountain top!

My words: "I don't know for sure all the symptoms of a heart attack for women, but I think I might be having one."

We walked into the ER. In pain, holding my chest and rubbing my arms, we waited for my turn calmly answering questions before going back for an EKG. The EKG tech ripped off the paper strip and left. Suddenly a crowd entered; a doctor leaned over and said "You are having an acute heart attack".

On the fourth day of my newborn son’s life, the desk clerk of the neonatal intensive care unit buzzed open the unit doors when she saw my husband and me approaching.

She stood up from the desk, telling us to immediately go to our son’s bedside to meet his pediatric cardiologist for the first time.

He had a diagnosis.

My heart disease story really began 29 years ago. I was 26 years old and heart disease to me was something that you face in your 70s and 80s. This view changed when my 55 year old father was diagnosed with 3 artery vessel disease and needed a triple bypass operation. Years later my 49 year old brother also underwent a double bypass operation. After seeing both my father and brother in the ICU recovery I told myself I don’t want to be in this scenario in my 50s.

The first thing I heard was a voice that said: “Your surgery is over, can you squeeze my hand?”, and felt a hand squeeze my hand, but try as I might, I could not return the squeeze. The voice and hand left. I was in a fog but remembered that I had undergone open heart surgery for a bad aortic valve. I could not open my eyes or move a muscle. I realized that I must have been given a paralytic that would (and did) eventually wear off.

“I’ve been given back my vitality & it’s great to be alive!!!” Physical fitness became my top priority, when at age 40 I received my first significant “Wake-up Call”. I was diagnosed with “Type 2” Diabetes. As late as age 51, I was working out 30 to 60 minutes a day, 5 to 7 days a week, alternating between cardio and weight training. Suddenly at age 53, with my first of what would eventually be a total of five heart catheterizations, I was found to have nearly a 2" total blockage in my “Widow Maker” which I had naturally Bi-passed and narrowly avoided a Massive Heart Attack!

For every heart parent, there is a before and an after. Whether the line is drawn in the darkness of an ultrasound room, in the silence of a NICU nursery, or in the bustle and shock of an ER, it is there for each one of us, dividing what was, and what is. My line appeared suddenly, seven years ago, when a chatty sonographer stopped talking and started measuring. Humans are supposed to have four heart chambers, apparently. Who knew? Most people like to keep their great arteries untransposed, as well, but my son Malcolm has always done things differently.

As I reflect on that day in September 14 years ago I am nothing short of a miracle. It changed my life forever. All emotions running wild through me miracle, hope, anger, confusion, strength , fear and determination. I have been asked several time s What Was Your Symptons? My answer heartburn! I was sent directly to the cath lab and remember the procedure starting, then suddenly people in and out of the room, making phone calls, then my cardiologist looked down at me on the table and said you have a 95% blockage and your not going home you need open heart surgery.

Everything I have in this life is because of my CHD and Jesus. My CHD and faith has made me who I am. I am grateful for my CHD. Yes, you heard that right, grateful for my CHD and you will see why.

I was born with Tricuspid Atresia and I always knew that pregnancy would probably never happen for me, but I was hopeful. My cardiologist advised my husband and I against getting pregnant. It could have been deadly for me and our baby. After many tears and weighing the risk, we ultimately decided that pregnancy was not the answer for us. It took me many years to accept that I would never be a mother in the traditional sense. However, I knew I'd be a mother. Somehow, some way.

Somewhere along the line, our line of communication collapsed and I let you down. For 45 years, you handled the heavy lifting inside of me. I trusted you. I tried my best to support you with regular exercise, a conscious vegetarian diet, my most effective means of stress management, not smoking, and not drinking heavily. We knew a few years ago that my good cholesterol was on the low side, but I admittedly let things slide by not getting my blood drawn in a good five years to check on you. I’d even maintained my normal weight of 168-172 pounds my entire adult life. So when I weighed myself that fateful day the emergency room, 198 pounds came as a total shock, though I admittedly had my concerns when my 33 waist Levi’s stopped working about 6 months prior.

“Now that you know and it is something that can be rectified after birth, the fear can now be safely cast aside... maybe your son will be a well-respected pediatric heart surgeon! I hope you overcome the disappointment soon and continue to see your son as a blessing.”

When I received this message, it had not been 48 hours since receiving my baby’s diagnosis: Double Outlet Right Ventricle (DORV) with normally related greater vessels and a Ventricular Septal Defect (VSD).

As I counted down the last few days before my second heart surgery, I began to surrender. I knew I needed to be strong for my daughters. I made the decision to to have a heart catheterization that was recommended by my surgeon and cardiologist two weeks prior to my valve replacement surgery. This would rule out any concerns or surprises.

Growing up in the 70's & 80's were some tough years on the spirit and mind of this young soul. Two open heart surgery's before the age of 5 and many needles and Mayo visits were routine it seemed for me to go through during those years. I had to learn about living with this heart disease and know it wasn't common to see other kids with this type of disease. I also had to learn about life and death much younger than I cared to.

CHD is cruel.

It’s with this disease that you realize life is a precious jewel.

You’ve had surgeries, echo’s, ekgs, catheterizations

And your two.

Hold on, why are your lips, hands and legs turning blue.