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.
Wow.
I’m an outsider to your world, but what a bitter sweet introduction. I was in tears reading your story because I simply can’t imagine your reality, yet every new thing my babies do scares me to the point of tears.
An inspirational read 🙂 I genuinely admire your strength xxx
Thank you Natalie – it has been quite a rollercoaster but it is all worth it when I look at my beautiful girls x
Powerful but beautiful words….In tears here!
Thank you Kim and sorry for making you cry x
Grace & Lucas say – We just want to send XL MEGA High-5′ to a very brave lil’ dudette and her most awesome parents xxxx #sharewithme
Thank you Grace & Lucas for your XL MEGA High-5’s x
What a beautiful post and so eloquently written. Then we see how gorgeous your little girl has grown up and realise that miracles do actually exist. In tears here after reading this. God Bless xx #sharewithme
Thank you and sorry for making you cry x
Oh my, this post made me well up! So wonderfully written, so full of hope and faith. I love all the photos, especially your happy, tearful faces when you’ve just brought your little angel into the world.
Thank you Jess, I love that photo too.
Oh Louise your pics are gorgeous and I felt the raw emotions of the diagnosis day through your words! How a 20min scan can change your life! So good to see how well she is now, how you decided to fight for her and how strong these little ones are x
Thank you Mary – I am sure that it must have brought many memories back for you too. Thank you again for sharing Poppy’s story this week x
Thank you for giving me a glimpse into your world though it was perhaps a difficult thing to write. Hindsight is a fine art and while you might not be able to go back and give this advice to yourselves, I have no doubt other people reading it will feel empowered, hopeful and inspired in the way they approach their own challenges x
Thank you Lorna – hopefully it will help other heart parents who are embarking on their journey x
What an inspiring and gorgeous post hunny. You are amazing for sharing it and so strong and look how amazing your little one is too. Bless. Thank you ever so much for linking up to Share With Me #sharewithme
Thank you Jenny, lovely to link up again 🙂
Another amazing post Louise, you are doing a great thing with raising awareness and sharing Jessica’s condition and your family’s journey. I have learnt so much from you and your wonderful daughter. Thank you again for sharing.
Thank you Jenni – glad to be helping raise awareness 🙂
Louise, I feel so blessed to know someone like you. You are strong, loving, determined and you write beautifully about your experience as a heart mummy. You and your Hubby sound like such a strong couple, so full of unconditional love for each other and for your little girls. They are lucky to have you, just as you are lucky to have them. xxxx
Oh Mel, thank you so much, what a lovely thing to say. I’m not perfect by a long shot and there are many times when I don’t feel particularly strong but I look at my little girls and realise how very lucky I am to have them both. Thank you so much for your lovely comment x
So many emotions running through my mind right now. I am sat here with tears in my eyes totally in awe of you and your gorgeous family.
My cousin had a baby who had CHD and I was just imagining them at that scan being told this news and it breaks my heart for them, you and anyone else going through this!
Jessica is an amazing little girl she is incredibly brave and very loved which makes all the difference!!
Thank you – she is definitely an amazing little girl and we are very lucky to have her. I hope your cousin’s baby is doing well.
What an absolute beautifully written honest post about the start of your journey. And I love your photos, the emotion in them has tears in my eyes, especially the first born photo xx
Thank you Laura – I love that photo too, captures just what an emotional and wonderful moment that was x
What a beautiful and beautifully written post.
Thank you.
Having read a lot of your blog, I’ve read this in pieces over the last while, but to read it all together is very powerful. Just, wow. You are very strong and Jessica is a very lucky girl x
Thank you Sara – we are very lucky to have her too! 🙂
So tiny, so strong and brave. I remember hearing those words for the first time, something is wrong with their heart. It breaks out heart as well!
They are such heartbreaking words to hear. I’m so glad that your little one is doing well x
Ah Louise your posts always make me cry! Your strength shines through – it is quite inspirational and, for those of us who have children who are completely healthy – it really puts everything in perspective. Thanks so much for linking up to #thetruthabout X
Thank you for your lovely comment Sam and so sorry to make you cry. Lovely to link up as again, thank you as always for hosting x
This is extraordinarily beautiful. The strength that you must have gathered through your experience is evident. I can’t even begin to express how much this moved me!
#thetruthabout
Thank you x
Such a beautiful way to convey those feelings Louise. I cannot imagine what you went through, but am so pleased Jessica is such a healthy happy little girl xx #thetruthabout
Thank you Renee. It is such a joy to see how well Jessica is doing now x
this is an utterly beautiful post Louise. So well written. Your hubby and you sound like the perfect match and such great parents 🙂 Thank you for linking to #PoCoLo x
Thank you so much – am very blessed to have such a lovely hubby who is so supportive. Lovely to link up to #PoCoLo again 🙂
Wow, this is a fantastic piece – my heart was in my mouth from the first few lines and I spent the time reading it praying it all worked out right – so glad that it has. Incredible story.
Thank you Lisa – so glad that Jessica is doing so well now – it has been quite a journey!
Such a beautifully written post, I can’t imagine how hard it was for you to write it all down though. x
Thank you Caroline – I find writing it down often helps me through it all x
Beautiful! Just beautiful.
🙂
Traci
Thank you Traci
We attended our 20 week scan on Sunday and have had a fetal heart scan today. Our little girl was diagnosed as having arch hypoplasia with reverse flow, a moderate single perimembranous outset VSD and a very small aortic valve. It feels like our world has ended but reading your story has given me HOPE. Surgery will be needed at birth and several other times in the future however we are staying positive. Thank you for sharing your experience xx
I’m so sorry to hear about your daughter’s diagnosis – I can imagine this must be a very scary and anxious time for you all trying to process it all and adjust to your world having been turned so completely upside-down. I’m so glad that our story has helped to give you hope – having that makes the journey a little easier. I hope that all goes well for you for the rest of your pregnancy and with the surgeries that your daughter needs to have. There are lots of heart family groups on Facebook which are a fabulous source of support if you want to connect with other families in similar positions. It certainly helped me to know that I wasn’t alone on the journey. Sending you virtual hugs and love and best wishes for the future xx
Thank you for your kind words. It’s going to be a long time before I fully understand what is going on but reading stories like yours is helping a lot xx