I am a voracious reader, and I consume books the way others consume food. (Actually, I love food, too, but I think if I had to choose, I’d say I love books more. Too bad I can’t just eat books.) I read a lot of good books, and a lot of not-so-great books. And every once in a while, usually about once a year or so, I read a book that I want to tell everyone about, because it affects me so deeply. The Heart of Jesús Valentino: A mother’s story, by Emma Gilkison, is one of those books. Since I read it, I have not been able to stop thinking about it.
Every parent thinks of their child as being one in a million, but for mum-to-be Emma and her partner Roy, their unborn baby was literally one in eight million. At Emma’s 12-week scan, they discovered that their baby had ectopia cordis – am extremely rare and usually fatal condition where the baby’s heart is growing outside of its body.
The couple immediately started to research possible treatments and surgery options, but another scan at 20 weeks confirmed their worst fears – their baby’s condition was not treatable. And so Emma and Roy faced the hardest decision of all: Whether to end the pregnancy, or continue in the knowledge that their baby would die.
This deeply thoughtful and heartfelt book is one I initially didn’t want to read, because I admit I was terrified of the subject matter and how it would make me feel to read it. No mum-to-be or mum wants to think about the possibility that something is wrong with their baby, or that their baby will not live. And as a parent who has lost a child, or a parent who has faced the worst news imaginable, it is a toss-up between being triggered and being comforted. And if you’ve been in that position, only you will know what is best for your own mental health.
I am a mother who has faced unthinkable news about my baby. I think that is why I was so worried about how I would react to reading Emma’s story. But as I read her words, and travelled with her on her pregnancy journey, I found the experience extremely powerful. Yes, it is a story of sadness and grief, but it is also a story of finding meaning in places you least expect, and the kind of light that can only be seen because it’s shining through darkness. I literally could not put it down. I read it in an afternoon, and navigated the minefield of my own emotions as I came to understand that Emma, like me, and like all mothers, just wanted to do what was best for her baby – whatever that was going to mean.
There’s a quote by Elizabeth Stone which says, “Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body.” This is a story about what that feels like on many levels. It is honest and authentic and raw and compelling, and I want everyone to read it. Even if you’re a bit scared, like I was. Because reading about little Jesús Valentino reminded me that sometimes the hardest choices can bring us the most profound blessings, and that great pain can birth great love.
The Heart of Jesús Valentino is available from Awa Press for $40.