To the Mom Who Just Found Out Her Baby Has Half a Heart

It’s been almost two years since we found out about my daughter’s “half a heart,” and I’ve been thinking to myself, If I could go back to her diagnosis day and tell myself anything, knowing what I know now, what I would say?

And this is it…

Wipe your tears, take a deep breath and clear your mind. Look at that ultrasound screen in front of you, steer your eyes away from her heart. Look at her! Her little face, her tiny body wiggling around inside of you. What do you feel is the right thing to do? Trust that, hold on to that and know no matter what lies ahead, you’re making the right choice for you, your baby and your circumstances.

You’re going to hear lots of stories, both good and sad. You’ll be given percentage rates that make you worry if it’s unfair to bring a baby with so slim a chance of survival into this world. Stop; you’ve made your decision, the future is not in your hands.

Take each day as it comes, don’t worry too far ahead, concentrate on now. Today is a blessing. This is something you will be forced to quickly learn to do when you spend so much time in intensive care.

Stop researching so much that you make your head spin. Stop trying to plan every single situation out. I know you want to be prepared, but honestly there’s no way to ever be prepared for the hard times you’re going to face. This is the honest truth.

You’re going to find out a lot of people’s real personalities, from one extreme to the other — some so insensitive and ignorant but others amazing, kind and unbelievably supportive. You will lose contact with people as they avoid you during hard times; they don’t know what to say. But be forever grateful to your true friends and family. You’ll make lifelong friends in your “heart family,” who will understand what you’re going through more than most.

Your other children will be OK! Yes, changes will happen; they will only have one parent at home while the other is at hospital, and they will not understand why for a while. They will find it hard to understand why their new sister is attached to machines with wires everywhere. Yes, it will take time for them to adjust, but they will. And they will be OK; they will even surprise you with how well they cope.

You will know every surgeon, doctor and nurse on a first name basis. You will learn every medicine, all about IV pumps, tube-feeding, x-rays, echos, what works for your baby and what doesn’t. You will end up feeling like a nurse yourself.

It’s OK to cry; you’re human. It’s OK to feel mad and that things are unfair; it isn’t fair that a child is dealt with a life-threatening illness. It’s OK to worry; you love and care for your children dearly, it’s natural. Don’t be too hard on yourself. You will do your best, and that is all you can do.

You will hand your child over for surgery after surgery, and there will be days you pray please no more backward steps. You will see things like her chest left open for days, her heart beating in front of your face.

But one day all this will be worth it.

You will get her well enough to come home. The days, weeks, months or years at home between different surgeries will be the best times ever.

She will grow, and she will show you what it is to be strong. She will laugh, and she will play. With every milestone will come even more amazement. She will be happy!

Most of all know your life is going to change beyond your imagination, and it’s going to be the best thing you have ever done.

Half a heart, not half a life.

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