It’s hard to believe that it’s been sixteen years since my brave girls had their open heart surgeries! Yes, both of them! For those of you who’ve followed my blog for a while, you might remember that I shared our CHD story just after I started blogging - Part one and Part two and every year since.
The short story is that my youngest jammed her fingers in a door where she needed surgery to fix them and a heart issue was found. An Atrioventricular septal defect (AVSD), a hole in her heart. We saw a specialist and when the symptoms were listed my eldest showed more signs so she was checked and had the same, an identical defect with her heart. Tests were done and surgery was booked in. We were told that if that freak accident didn't happen and the heart defects weren't found one of my girls would have just dropped one day and their heart would have given up. The girls went into hospital on the Sunday the 16th of August, we remember it well as it was my fellas birthday, Becky had her surgery on the Monday and Ellie on the Tuesday, both spending a night in PICU. It still doesn’t feel real saying that out loud.
A congenital heart defect (CHD) is a problem with the structure of the heart that’s present from birth or even before. It can affect how blood flows through the heart and to the rest of the body. CHDs are the most common type of birth defect, in fact, around 1 in every 100 babies is born with some form of heart condition. There are many different types of CHD. Some are mild and may never cause any noticeable symptoms while others can be serious and require surgery, sometimes within the first year of life or even before your child is born.
Thanks to advances in medicine and incredible cardiac teams across the country the outlook for children born with CHD has improved dramatically over the past few decades. Many children with even the most complex heart conditions go on to live full and active lives. That’s why awareness matters. The more people understand about CHDs, the more support there is for affected families and the more funding can go toward research, treatment and support services. Many heart families go through long hospital stays, countless check ups, emotional strain and uncertainty that can stretch across years.
I remember the feeling of helplessness so well. One child just out of theatre, groggy, with wires and tubes everywhere and then barely having time to catch our breath we had to hand over our youngest for her own surgery. My heart broke a thousand times that week but it also swelled with pride and love in ways I never imagined possible! Fast forward sixteen years and both of my girls are thriving. They’re smart, funny, thoughtful, resilient and absolutely full of life. You would never guess they have had heart surgery just looking at them unless you noticed their scars.
It is important to me to keep telling this story. Not just because it’s a huge part of our lives but because I know how comforting and encouraging it can be for other heart families to hear that there is light at the end of that terrifying tunnel.
If you’ve found your way here because your child is about to have heart surgery or they’ve just had it I want to say this clearly and honestly: I know how scared you are! I know the crushing weight of waiting! I know the ache of watching your child hooked up to machines! I know the feeling of forcing yourself to eat a sandwich you don’t want because you haven’t eaten in 10 hours! I know the fear! I know the hope! I know the guilt! I know the strength you don’t even realise you have yet but I also know this: There is hope! You will get through this. Your child is stronger than you know and you are too! There will be a day maybe not tomorrow, maybe not next week but one day when the beeping monitors and hospital smells are a distant memory. One day, you’ll be watching your child laugh with friends, roll their eyes at you during a family dinner or tell you about their dreams for the future and you’ll feel this enormous wave of gratitude for just how far you’ve all come.
Here are some of my previous blog posts about heart defects, surgery and the aftermath!
There’s not a day that goes by when I don’t feel grateful to the NHS. For the surgeons who fixed my girls hearts, the nurses who helped when they were in pain, gave me a hug when I felt helpless and for every single person who supported us during those scary days.
We’ve come a long way since that hospital ward. The fear is still there sometimes, I won't let my girls ride rollercoasters in case it stresses their hearts, anniversaries tend to stir up all sorts of emotions but now the overwhelming feeling is gratitude. Here’s to sixteen years of strength, healing and hearts and here’s to the future because it’s looking so very bright!
