Six years ago, when my husband and I welcomed our first son into the world, we thought we were welcoming a perfectly healthy little boy into our lives. A NICU doctor handed him to me and said those exact words, “Congratulations you have a perfectly healthy baby boy.” Everything was exactly how we had pictured it.
That picture perfect situation lasted about twelve hours.
The next morning the pediatrician told us our baby boy, Zane, had a heart murmur, but not to worry – it could go away in a day or so. By the second day, when we were ready to take our bundle of joy home, but his tiny murmur hadn’t gone away. Instead, it had gotten worse.
We were told we should have him seen by a pediatric cardiologist by the end of the week. As a pediatric nurse, I knew how difficult it was to get into a pediatric cardiologist, so I also knew that if they wanted my son seen that quickly it wasn’t good.
Our picture perfect situation was officially over.
We waited five long days before we took our son to the cardiologist. We stayed firmly in a state of denial because our son looked and acted perfectly healthy. The day of my son’s first cardiologist appointment is one of those days in my life that will forever be burned in my memory, June 25, 2010. After holding my sweet son, while he screamed through his first echocardiogram, we were taken to a room to wait. We waited an extremely long time and with each passing minute it was becoming clearer to me that the news wouldn’t be good. The doctor opened the door holding a piece of paper with a diagram of heart on it. This diagram showed ALL the things that were wrong with our son’s heart.
That day my son was diagnosed with Tetrology of Fallot, a congenital heart defect that involves four different abnormalities in the heart. I remember the doctor telling us the diagnosis and handing us the lovely diagram of a heart, but after that the rest of the very long conversation is a complete blur in my mind. I remember him saying that Zane would need at least one, possibly multiple, surgeries as baby and at least one later in life. The doctor told us multiple times that Shaun White had been born with the very some congenital heart defect and he grew up to be a professional snowboarder. I think this fact was suppose to be comforting to us, showing us that our son would be fine and go on to live a normal life. This fact did NOT calm our fears at all.
That day I was thrust into a knew world and became a member of new club, the heart mom’s club. It’s a club no one wants to be a member of, but so many moms are. Congenital heart defects (CHD) are the number one birth defect in children. Over 40,000 babies each year are born with some form of congenital heart defect, that adds up to about one in every one hundred babies having some form of CHD. There are a wide variety of defects, ranging from minor things that require no surgical intervention, to complex heart conditions with multiple abnormalities, that will require multiple surgeries, and life long care. This makes congenital heart defects the leading cause of birth defect associated infect death in the United States. Each year one to two hundred children loose their battle with CHD, earning their wings as heart angels.
This was a world I knew very little about before I had my very own little heart warrior. Luckily for me, my son’s heart condition was treatable with surgery. He was did amazingly well for the four months leading up to his surgical repair. We lived each day in fear of him turning blue and having to be rushed to the hospital. However, Zane did great, gaining weight, and he was finally big enough for his repair right at four months old.
I am fully aware that my story is the best case scenario. We didn’t have any complications, he only required one repair as an infant, and has done amazing well since. In the past six years I’ve heard lots of stories and met lots of fellow heart moms. Their stories often include months in the hospital, multiple surgeries, difficult recoveries, and the unimaginable loss of a child. This heart mom club, of which I’m a proud member, is a strong group. We’ve weathered storms, we’ve fought big battles, and our fights are never truly over.
For the past six years I’ve celebrated my heart warrior everyday. Every single day I say a prayer thanking the good Lord for the miracle that is my son’s beating heart. There is never a day that I take his life for granted. CHD affects a huge number of people, but is often not talked about because children, and adults, who are living with a CHD diagnosis can hide their scars so well. After a child gets a repair they often seem perfectly healthy. If you met my crazy, wild, son you would never guess that he’s living with a life long heart defect. Holes can be patched and valves can be replaced, but his diagnosis is something he will have to deal with for the rest of his life.
It’s because of my journey as a heart mom that each year during this week, Febuary 7th-14th, I try to do my part to raise awareness for the millions of people who are either living with a CHD diagnosis or who have had their lives touched by someone with CHD. So often when someone learns about my son’s heart condition they have a story to tell of a heart warrior in their life, their brother, their sister, or their friend’s child. I encourage everyone to think about donating to a charity that either helps heart families, who are spending extended periods of time in the hospital, or donating to a charity that funds research into finding new ways to treat the many forms of CHD. This week as heart moms we wear red, we encourage our heart warriors to rock their scars, we tell our stories, we count our blessings, and we remember all the little heart warriors we have lost their battle with CHD and are now looking down on us from heaven.
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About Audra Korenak
I grew up on a farm in North Western Oklahoma, but moved to St. Louis after getting my bachelor’s at the University of Oklahoma. We lived in St. Louis for seven years, where I got my bachelor’s in nursing and began my career as as pediatric nurse. While we were in St. Louis we had our first two boys. We moved back to Oklahoma in 2013 and are now settled in North Edmond. I now work at OU Children’s & we will be welcoming our third boy in April. I love being a boy mom, a heart mom, crafting, swimming, and traveling in my free time.
