To My Younger Self on the Day of My Daughter's CHD Diagnosis

If they ever create a vehicle that can drive to the past, I know exactly where I’d take it — straight back to September 4, 2014. I’d cruise the shiny new machine to the covered parking garage and hustle to the waiting area of the cardiologist clinic, making sure I arrived in plenty of time to greet my younger self. As soon as I saw my pregnant body trudge, dazed, out of the consultation room, I’d envelop her in a hug and rub her baby belly.

I know her mind is spinning from the diagnosis of her daughter’s congenital heart defect. I’d take her for a drive to process the news (she does her best thinking and talking on the open road). I’d let her do the talking, but I know she won’t say much. She’s too much of an introvert to spill all her inner thoughts. So, knowing what I know now, and knowing that I still don’t know much, this is what I’d tell her.

I wish it wasn’t this way. I’m sorry your baby has to go through this, that any baby has to go through this. I wish every child had a heart that would sustain their body through a lifetime.

Be flexible. Congenital heart disease is complicated and unpredictable. Trust in the plan from the doctors, but don’t marry it, the plan may change. Your daughter is in charge; she’ll dictate the care she needs.

Don’t be afraid to speak up. You’re the momma, and you are an integral part of the team that cares for your child. Don’t be afraid to speak up when something doesn’t seem right. You are her best advocate; she needs you.

Finally, you’re not alone. This life will feel lonely at times, but you’ve instantly and irrevocably become part of a league of parents, families, individuals and medical professionals who fight congenital heart disease every single day. You’ll be surprised by the knowledge, support and care of this heart community. And when you’re ready, reach out to them. Even though you don’t know them, they’ve already welcomed you in.

I’d embrace her again, wipe her tears and send her on her way. But then I have to return back to the present and savor every moment. I better hurry to ensure I’m home when my future self rings the doorbell. There’s still much for me to learn.

Follow this journey on Little Heart Blossoms.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Congenital Heart Defect/Disease

Painting of yellow flowers next to a green plant in a pot

The Lie I Told Every Day: ‘I’m Fine, Good, Never Better’

“How are you? How’s life?” people ask. “Fine! Good! Never better!” we might answer with a lie and a big smile. There might be times it seems like it’s easier to lie to everyone, but please stop — at least don’t lie to yourself. I was starting to be great at lying to myself. And [...]

Why We Need More Congenital Heart Defect Awareness

My story is not unique, although each time I share it, it makes people gasp. My 2-year-old son, Finn, was born with a combination of congenital heart defects (CHD) or in short, heart disease. CHD is the most common type of birth defect, yet when you visit your OB’s office or have appointments with your pediatrician, in [...]
Child holding stethoscope to teddy bear's chest in home living room

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 [...]
silhouette of bridge and pair of lovers on city background

What It Entails to Love a Person With a Congenital Heart Defect

When my husband (then boyfriend) first said “I love you,” I paused and started to panic in my mind. For so many years, I doubted that I was lovable or that I would find someone to spend the rest of my life with because of my congenital heart condition. There is so much that comes [...]