The Day You Can Start Calling Me a Congenital Heart Disease Survivor

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I know many people who like to call me a survivor, I don’t hate it, but I don’t associate with being a survivor. At a congenital heart event I was approached by someone I didn’t know, and when they asked if I was a survivor, I turned around to see who was behind me. To me being a survivor is past tense, and there is nothing past tense about congenital heart disease (CHD). So, when is the day you can call me a survivor?

1. Maybe when you speak at my eulogy.

Unfortunately, there isn’t a finish line with CHD and the only time I feel like I may be a survivor is after receiving one of my new leases on life. But those are usually far and few between. Instead, I live as a fighter. Even Superman needs a superhero, so I am always looking up to find mine.

2. Maybe when we find a cure.

All adults with CHD are paving their road. We are pioneers leading the way for all that follow us. We don’t have all the answers, and often we feel like a guinea pig. But for all kids fighting CHD, I would be a guinea pig every day to give them a brighter future. I know that those that came before me allowed me to live and I know that it is my duty to pass the same to the next generations.

3. Maybe never.

That is why they call us warriors. It isn’t gloom to think that I will never be a survivor because at this point in my life there can never be a cure. Things could drastically improve, but an actual cure for CHD likely lies in utero. I know that, and I know no matter what that many of the challenges of CHD can and will be, no matter what future medical advancements may hold to try to repair or replace my heart.

We have so far to go before we can use the survivor tag in conjunction with CHD. Each generation may have better outcomes than the last. However, we add more complicated kids to our community each year, which creates a whole new level of care and knowledge and a new set of patients that are as far from a cure as I was when I was born.

The back of the writer, picturing him with a cape that reads, "TOF strong."

4. Always in front of your child.

Yes, for your CHD child who needs someone to look up to, I will always be a survivor. I am hope, just like those older than me. I won’t deny that label so that they understand what blessings they are holding in this life. I am just one call away when they need me.

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Dear 13-Year-Old Me, Who's About to Undergo Her Fourth Open Heart Surgery

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Dear Nicole (ver. 2002),

I know you’re probably going through a hard time right now, but you don’t show it to anyone. I know during the summer you will have to have your fourth open heart surgery for your new mechanical mitral valve and just to let you know, it will be the last one you will have for at least 15 years (that’s how old we are now).

I can’t believe you are going into eighth grade; yes, it will be tough, but you are tougher. You got through open heart surgery and you had a few ups and downs, but just know your family went to the ends of the earth to make you feel better. Please remember to thank them more for me. Please thank Uncle Jay and Sarah for going up there and bringing all the things that helped you get through that second wave of sickness after the surgery. Make sure you call them and try to see them more… you’re going to miss him.

When the summer winds down you’ll get to go back to Boys and Girls club but it will be different for you, and you’ll always feel different. Just remember you are stronger than they will ever know and you really don’t have to explain yourself to them. There will be kids who tease you about your new scar and about the weight you gained over the summer on steroids. But please don’t cry; it’s OK. I mean, I know you’re going to cry, but then move on. Make the time you have count.

old picture of a girl about to have her fourth open heart surgery

On a final note, the clicking doesn’t get better for a while…sorry to say. It will be just as loud as it is for at least a year. Even in college (you’ll get there and you’ll have a blast…a story for another time), your roommates will wake you up because they think there is a bomb in the apartment. Don’t worry, your stories with them will only get funnier, wilder and sometimes sadder through the years.

Please stay well and please keep your head and heart up.

With all my love,

Nicole (ver. 2017)

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A Letter to Adults Living With Congenital Heart Disease

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Adults living with congenital heart disease (CHD), you are not alone.

There are a lot of you.

Over a million, in fact.

There are more of you living with congenital heart disease than ever before.

You, as survivors, need to hear something from the parents of children living with CHD: Thank you.

Thank you for being the lighthouses. Thank you for being the beacons of hope for all of the babies born after you. Thank you for sharing your stories, they stay in our hearts and have inspired us in our own journeys.

Thank you for sharing the dark times, the scary times and the emotional toll living with a chronic illness can take on you. Thank you for sharing how you cope with it all. Thank you for taking care of your emotional health, as well as your physical. Thank you for taking care of yourself.

Thank you for addressing issues in your care that can create positive changes for not only other CHD adults and children, but for CHD providers as well. Thank you for being proactive and vocal about your health.

The writer's young son wearing a shirt that says, "Heart Warrior."

Thank you for your strength and your compassion. Thank you for your kindness towards others. They may not be going down the exact road that you went, but your understanding and empathy mean the world to us.

Thank you for giving me confidence that when my son enters adulthood, he too will competently take his health into his own hands. Thank you for showing me that he will be OK. Thank you for being exactly who you are. Thank you for being proud of who you are, we are proud of you, too.

From,

A mother of a child with CHD

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My Unborn Baby Was Just Diagnosed With a Congenital Heart Disease

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A few days ago my husband and I experienced one of life’s redefining moments — the ones that divide time into two parts: before and after. I had a fetal echocardiogram done and our unborn baby girl was diagnosed at 24 weeks with the congenital heart disease Tetralogy of Fallot (TOF).

The diagnosis shattered our world and our hearts. It was unexpected and the last thing on our radar. We were still ecstatic after recently finding out our baby was a little girl. We went from being on top of the world, to quite frankly the lowest point we’ve ever been at as a family. This pregnancy has been high-risk and complicated since week 20 when we learned our baby’s limbs were measuring two weeks behind where they should be in comparison to the rest of her body. Since then, it’s been test after agonizing test trying to pinpoint what — if anything — was wrong with our precious baby girl.

The only silver lining at this point is now we know what she has, we can start educating ourselves about her disease and prepare our family for what’s to come.

We have yet to be able to tell all of our family or even our closest friends. I am so overcome with emotion — often falling asleep in tears and waking up the same way — that sometimes speaking about it out loud hurts too much. So, I decided to write this blog because there are a few things I wanted you to know.

1. I couldn’t tell you in person.

Writing has always been the easiest, most natural way for me to express my emotions, so forgive me for not telling you in person. I wish I had the strength to call everyone and explain what is going on, but at this moment my heart is too heavy. The information is so complex and wide-ranging. I am too scared, too anxious, too overwhelmed to think about the uncertainties.

2. The more we learn, the more we will share.

At this stage all we know indefinitely is our baby girl’s diagnosis is Tetralogy of Fallot, a disease that encompasses four heart defects and requires at least one open-heart surgery at birth or shortly after, plus lifelong treatment. In short, the defects mean her blood does not flow properly through her heart and does not carry enough oxygen to her body or blood to her lungs. Our baby has three of the four defects that make up TOF, including a hole between the lower chambers of her heart, an overriding aorta and a tiny, narrow pulmonary valve.

3. Please pray or send positivity to our baby warrior.

Her name is Nylah (NY-lah). We were saving her name to reveal at her birth, but decided to share it with you now so in your prayers you can speak her name, Nylah. We are praying very hard she will stay in my womb as long as possible because as our fetal cardiologist has said, a premature birth will only add to the complexity of Nylah’s fight once she is born.

4. Will she be OK?

We have asked ourselves that same question over and over throughout the course of the last few days. Every year TOF occurs in five of out of 10,000 babies and Nylah is one of them. While Tetralogy of Fallot is a disease our doctors have dealt with before, every case differs depending on the baby and her history. It’s really in God’s hands.

We know Nylah is OK while inside my womb because she gets her oxygen and nutrients through the placenta, but once she is born, her battle, and ours, will begin.

We know she’s a warrior, a fighter, because I feel her kicking and swirling around all day and all night long.

Going forward we are praying for Nylah to continue to develop and grow in my womb for as long as possible, that way when she is born, she has an incredible chance to thrive.

#PrayforNylah

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To My Daughter With Down Syndrome as You Face Open-Heart Surgery Again

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I wish I didn’t know it’s best to braid your hair in two little braids right before you go back to the OR for open-heart surgery. We won’t get to wash your hair for many days, and this will keep your red locks from getting tangled and matted.

I wish I didn’t know one day soon they will put you to sleep, for the third time, and place five IV lines in your little body. Through one of them, a doctor will give you a medication that stops the beating of your heart — a heart that works hard to do so. A machine will breathe for you and circulate your blood while a surgeon delicately performs another life giving operation. I will cry and pray and wait a few rooms away.

 

You will come out of surgery and for the third time the sight of you will take my breath away. I will search for and find a little hand among the wires and kiss it with tears of gratitude.

You will be brave and sweet and all the nurses and interns will be smitten with you and come by your room just for a fist bump or a high five. You will be cranky with them because you’ve been poked and prodded too much. You will rest and heal. You’ll blow bubbles and play the guitar with the music therapist — I will tell her that Old McDonald is your favorite song. You will probably get to eat chips for breakfast because you get to eat anything you want the week after heart surgery.

Once again, you will be stronger than I thought you could be so I will be, too. You will astound me.

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An Open Letter to My Congenital Heart Disease

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Dear “Topher,” my Tetralogy of Fallot,

I hate you! What have I ever done to you? I mean, seriously!? For seemingly no apparent reason, you have put me through some of the worst times in my life (both physically and mentally), and you caused my family and friends to worry about my very survival in the face of major surgery — not once, but twice. And knowing you, you may very well have plans to do so again in the future. But, of course, that’s just an unknown at this point, and naturally you won’t give me much of a head’s up if I do have to go through that experience again.

I have done absolutely nothing to you, yet you’ve left scars on my body that remind me of those perilous moments virtually every time I see them. I really never wanted to be in the one percent. I’m already left-handed and gay. Why couldn’t I have been in the majority here — you know, part that wonderful group of people not born with a wonky heart and subjected to a lifetime of necessary specialized care? This sucks! Thanks for nothing!

But if I’m being honest with myself, I also love you and appreciate you more than I ever thought possible. You made me part of a community that is filled with some of the strongest, most dedicated, and most compassionate people I know. You introduced me to wonderful friends, peers, and allies across the country— people I never would have met if I was “normal.” You’ve given me the opportunity to share my story on Capitol Hill and in front of audiences across the country. You made it possible for me to no longer fear my own mortality, but rather to embrace the limited time I have on this planet to live the best and fullest life possible. You gave me the strength to quit a job that wasn’t right for me, to take a leap of faith in myself, and to walk 500 miles across northern Spain carrying nothing but a backpack and a quest for new adventures.

Twenty years ago, as an awkward teenager, I used you as an “out” of playing football, a sport I never really cared for and certainly had no interest in playing anyway. But kids can be cruel, and there are a whole host of adjectives that typically await a young boy who doesn’t want to play football. Yet no one ever questioned me when I said I couldn’t play because of a heart condition. (So thanks for that! Congenital heart disease for the win!)

In different ways, maybe we just use each other in this relationship. You use me (and many of my friends) as a test case for new medical treatments and technologies. (Speaking of which, the next time I need a new pulmonary valve, maybe we can try that catheter thing instead of the open heart approach, eh?) And I suppose I use you too occasionally as an excuse to get out of doing something I don’t want to do. But much more often as an excuse, a reason, or a kick-in-the-pants motivator to do what it is I really want to do and deserve to do.

So let’s make a deal, shall we? I’m certainly under no false illusions that our future together is going to be all flowers and trees. I suspect there will be some more IVs and Holter monitors in there. But, for better or worse, we’re stuck with each other. So how about we do what we can to focus on the better a bit more? How about we look out for each other so that we can each become the best versions of ourselves? If necessary, I’ll let you use me to advance the medical field’s knowledge of congenital heart disease. But you have to agree to let me use you to keep living the most amazing and adventure-filled life that I possibly can.

So do we have a deal?

Living and loving you with all my heart,

Ken of Hearts

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Thinkstock Image By: Jacob Ammentorp Lund

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