I see you sitting there in that scan room. Cold with fear and the terrible realisation that something is wrong, very wrong with your baby’s heart. I see you clinging to each other. Neither wants to voice the terrible thought that fills both your minds – that your child will die. I see your tears, your pain and the little spark of strength that will ignite and grow and keep you going.
I see you, outwardly trying to remain calm as you wait for the first echo. The way you hold tight to each other’s hands as the cardiologist draws his diagrams and tries to help you understand just how unusual your baby girl’s heart is. I see you taking in the prospect of three or more open heart surgeries, a fifty percent chance that your child will see their fifth birthday, and your determination to give her a chance of survival.
You are utterly terrified, not knowing how or where you will find the strength to get through the journey that lies ahead of you. Holding on to your belief that God is bigger than all this, that somehow He will give you the strength to endure whatever it is you have to endure even if your worst fears come true. You pray fervently that you will not have to be tested that far.
This is the start of your journey as a heart parents. This is the hardest day you have ever faced and yet there will be still harder ones ahead. You will get through them. That little spark of hope and faith will lead you to search and question. It will make you willing to take huge steps into the unknown in order to give your child a chance of life. You will discover that sometimes miracles really can happen. You will also discover that pain and joy can go hand-in-hand. That fear of the future forces you to live in the moment and helps you to enjoy it. You know that this time while your child is still in the womb may be all you have and so you make the most of it.
You will discover just what a blessing the love and support of family and friends really is. Knowing that complete strangers are praying for your little one and you will leave you feeling humbled. You will find that your friendships will change though. There will be those who do not know what to say and their silence may come across as hurtful. Forgive them. There will also be those who surprise you with their kindness and who will be there when you need them most. These are the friends who will walk the path with you where they can and make the journey a little more bearable.
When your baby girl arrives and you hear her first cry, you will feel pure joy, overwhelming and beautiful in its intensity. You will treasure those brief few moments of being able to cuddle your daughter before she goes to have her first surgery. Whilst those hours of her being in surgery will also be full of fear, the joy of those early moments will carry you through.
You will discover that life on the intensive care unit is a rocky rollercoaster of a ride. Things can change very quickly. You will spend hours sitting next to your child’s cot, gazing at her. That moment when you can finally give her a cuddle once again will be utterly magical, despite your nervousness about all the wires and tubes that surround her.
That momentous day that you finally get to take her home will be a hugely proud moment. You will wake in the night and constantly check to see if she is warm and breathing. There will be many, many moments of worry. You will enjoy being able to have a taste of normal life though, even if you don’t dare look ahead.
Going back into hospital for future surgeries will always be terrifying. That moment of handing your child over to the surgical team will never get any easier. In all honesty, it will get harder. There will be many, many moments spent in hospital chapels praying that your child’s life will be spared. Thankfully there will also be many moments of giving thanks that your little one has made it through another surgery and praying for her recovery.
You will discover a whole community of heart families. There will be friends that you make during your time on the ward. Others you will encounter through social media. You will be blessed through knowing others who are making similar journeys. Some will be walking their journeys alongside you. Others will be further ahead in their journey. Their stories will often help to give you hope. One day, your story will be one of those helping to give hope to others.
Be kind to yourselves and each other. There will be many moments when it all feels too much. It is good to cry and to acknowledge those fears. There will be many moments of feeling guilty. You will feel pressure to be a perfect parent, knowing how blessed you are to have your daughter. You are human. No-one is a perfect parent, no-one gets it right 100% of the time. Everyone has days when they shout at their children. Don’t be afraid to seek help if it all feels too much to cope with. Remember too that you are not in control. No amount of worrying about what lies ahead will change it. All you can do is to trust in your instincts, ask questions and have faith in those who are caring for your child.
You are stronger than you know and surrounded by more love than you ever dreamed of. You will get through it. Your little girl will bless you in so many ways – her zest for life, her joy, her smiles, her cuddles. You will tell her every day how much you love her. Watching her playing with her toys (and later with her baby sister) will fill you with joy. And though those steps along the way will be every bit as hard as you fear, they will be worth taking.
Written in response to being tagged by Heart Mammi to respond to the question ‘If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?’ originally posed by The Mighty.