Mother’s Day: treasuring the moments

To help Action Medical Research celebrate Mother’s Day mum Louise, whose daughter Jessica has a rare heart condition, kindly shares her thoughts on the wonder and worry of her very special ‘mummy journey’.

Motherhood is a beautiful thing. An exhausting, challenging, overwhelming, all-consuming, beautiful thing. It’s a rollercoaster ride through so many different moments – magical moments, frustrating moments, worrying moments, precious moments. It’s something that I am incredibly thankful for. To be able to watch these two little girls of mine grow and thrive; to be able to hold them close and feel them snuggle up to me is the most wonderful thing in the world.

My ‘mummy journey’ has been an eventful one. When I was 20 weeks’ pregnant with my eldest daughter, Jessica, we discovered that she had a complex heart defect called hypoplastic left heart syndrome (HLHS). The left side of her heart was underdeveloped: effectively, she had only half a working heart. We were told that her heart defect was so severe, it was unlikely she would be suitable for the surgery she needed in order to survive. Thankfully, we were offered in-utero surgery when I was 28 weeks’ pregnant which gave Jessica the chance she needed. Six years and four surgeries on she is a happy little girl who is currently doing very well and not letting her half-a-heart get in the way of living life to the full!

My first Mother’s Day with Jessica was such a big milestone. To be woken up at home by my six-month-old daughter; to be able to enjoy a day together as a family, making memories together and then to watch my sleeping baby in her Moses basket at the end of the day was something that I’d hardly dare dream I’d have. It was a moment made even more precious by the knowledge that the future was still uncertain. There was still more surgery to come and the fear of what the future might hold meant we lived from day to day, making the most of the time we had.

Four years on and I’m now lucky to be a mummy to two little girls: Jessica – my five-year-old heart warrior – and three-year-old Sophie, who is heart healthy. Two little girls who make life busy and keep my hands and my heart full. Watching them together, you would probably never guess that one of them has only half a heart, although if you watch closely, you would notice that Jessica tires more easily than her sister and can’t run as quickly. She’ll need another surgery in the next year or so. Her heart condition cannot be fixed but the surgery will help to ‘re-plumb’ her heart and make it work more effectively.

We don’t know what the future holds. For now though, we will make the most of the moments. To be able to spend Mother’s Day with my two girls and hold them close is the best gift I could ever ask for. I’ll treasure the cards, and the presents, but most of all, I’ll treasure the moments and hope with all my heart that there will be many more moments like these ones to enjoy.

You can find out more about HLHS and researcher Dr Pablo Lamata who, with Action Medical Research funding, is working to help children like Jessica here.