Why It's Important for Me to Talk to My Daughter About Her Heart Health

The sun drenches the room in warm light, and you and I sit, tending to the needs of yet another stuffed animal with a cold. You carefully pull out the instruments from the little purple vet-kit your father and I bought you when you first showed an interest in being a doctor. You use the stethoscope and pretend to listen to the heartbeat of your patient. I chuckle with pride as you list off all the medical instruments. You might be the only 3-year-old in this whole town that knows all the tools and the functions they serve. You mimic the “bum bum” sound and I smile, waiting for you to tell me the verdict. But then, out of nowhere, you say something that absolutely knocks the breath out of my lungs.

“His heart sounds strong and healthy. Just like my heart!”

I freeze. My heart starts to pound, and it hits me so much harder than I ever thought it could. After the many surgeries, echos, cardiac caths, drawings, diagrams, lectures we got on your heart and its struggles, I could rattle off to anyone your delicate anatomy and the function of your special heart. And sure, I knew at some point we would need to tell you all about it, but I guess I never realized how sudden it would be.

Your father and I don’t treat you differently. We treat you like the awesome, stubborn, firecracker little girl you are. We never let any dream go unsupported whether it’s being a doctor or — more recently — being a lion king like Simba. We call you our big, strong girl because you are the strongest girl we have ever known. As you play, it would make sense to make the connection (like all those kid-shows do) that big and strong also means healthy.

But strength and growth do not always mean health, and our play time has reminded me of this — reminded me I need to talk to you about your health. I am your mother, and I believe with every fiber of my being that you can do and be anything in this world, but I have to arm you with the knowledge of yourself and your special heart. I have to teach you the lessons your father and I are learning just steps ahead of you. You, my daring daughter, are more special than you realize. You will need to know this as you grow and begin to enter a world in which you’re not surrounded by people who love you unconditionally, and will not always advocate for you the way your father and I will. You will need to rattle off your anatomy at a moment’s notice to someone in an emergency, and it’s our job to make sure you know how to do it. How did I not prepare for this conversation? How did I not plan what to say so when the time came I could do this with tact and tenderness?

You’re looking at me now, expectantly. You say it again, perhaps assuming I must not have heard you. You’re waiting, like many children your age do, for confirmation that what you said — your understanding of the situation — is correct.

I take a deep breath.

“You know, baby, you have a very special heart.”

“Uh huh.”

You turn and begin tending to your patient. I hesitate before I continue.

“You remember going to the hospital, baby? We go there so the doctors can take care of your heart.”

You look at me now and grin while you hold our patient upside down.

“Floppy is so silly, mommy!”

I smile, “Yes! He is very silly.”

You have moved on. I can tell that you aren’t interested in talking about the hospital again. I let it go, realizing this really isn’t the time. But it’s the beginning. It was the first of many conversations we will have over the next few years as we help you understand how rare and special you are. As I watch you run to grab our next patient, I realize that like so many things in life, this will not happen in one day. It won’t be a hurdle that once past, is over and done with. This will happen through joys and sorrow, through tears and triumphs. Through ongoing love and support — just like every step of the journey so far.

I look at you standing there riffling through your bin full of potential patients, looking for just the right one. You are so beautiful and smart. I know it won’t take long for you to not only understand your heart, but to realize that it will never hold you back from what you want.

Dream big, Ellie. We will be there every step of the way — with love, support, knowledge, and maybe a diagram or two.

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Thinkstock image by evgenyatamanenko