Underneath and overhead

You have never been so afraid. Your daughter looks up at you from the crook in your right arm, makes a kissy face and then a smile and gurgles happily, pink and plump and blue-eyed. She is the picture of health. And though you try to fight them back, you feel the hot tears spill over your cheeks. They fall onto her upturned face and you wipe her dry, then tenderly stroke her soft hair.

You try to take it all in as the doctor talks on about the hole in her heart, the one that is half a centimetre wide, that is pumping blood into her lungs that shouldn’t be there. Your precious baby girl. She is only 17 days old, how can you protect her?

“Probable,” he says. Probable is the word he chooses to describe the likelihood that your tiny baby will need to undergo open-heart surgery in six to eight weeks. There is a moment in which you think you are going to be sick but instead you bring up a sob that is as hard as stone, and drop more silent tears onto your daughter's little face. “Although she might surprise us,” the doctor adds.

When you get home she cries and cries, over-tired and overwrought, so you swallow your own tears to try and comfort hers. Eventually, her dad sings her to sleep. You tip-toe into the room and look over her as she slumbers, her face relaxed and lovely, her dreams trouble-free.

But everything has changed. The joy you felt this morning from watching her sleep is gone. Now you know that underneath that peaceful face, those eyelashes that softly quiver, is her traitor’s heart, a heart that even now is pumping blood where it shouldn’t go, pulling your daughter into danger.

You wonder how you can ever be normal for her, in the days and weeks to follow, while there is nothing to do but watch and wait. I wrote the piece above yesterday after returning home from the hospital with Madeleine's diagnosis ("ventricular septal defect" is the official term), as a way to express the grief that overwhelmed me.

I wrote it in the second person because I just couldn't stand any closer to the fear. I didn't call my friends or tell a soul, because I couldn't (and still can't) talk about it. So my words on here will have to do instead.

But I want to end this post on a more positive note, with the double rainbow that stretched overhead like protective arms around our family when we took a walk together on the weekend.

There is good reason for us to have hope, among the fear. We discovered the defect in time, thanks to the vigilance of one of the midwives at our maternity hospital who picked up an anomaly the very night our baby was born. We have one of the best health systems in the world, and Madeleine's care will be limitless and free, thanks to our tax dollars at work. All three cardiac surgeons at the children's hospital are world class, and each performs this operation on babies several times a week. And after her operation, Madeleine will be well. No suffering. No more danger.

Yesterday I let grief take me. Just for one day. Now I will be positive and full of that hope, because that is what my little girl needs.

While we watch for symptoms to appear and wait for the operation she will most likely have to have, I will dedicate my hours to giving her love, making her laugh, ensuring she feels safe, and dreaming about her future.

Never miss a post