Friday 13th May 2011. A day that was hugely significant for us; a hospital appointment that would change our lives forever. Looking back, I recall it as a series of flashback moments. Walking into the hospital holding hubby’s hand, my legs shaking and a sick feeling in the pit of my stomach. Sitting in the waiting room before our appointment and praying that we would leave with hope, that Friday 13th wouldn’t prove to be unlucky for us. The silence in the room as I lay on the bed, bump exposed, being scanned.
The cool, clinical way in which we were told that our daughter’s heart condition was so severe that it was unlikely she would be suitable for surgery. The quick hot surge of anger that briefly filled me on the assumption that I wanted to terminate and the vehemence of my refusal. The throwaway, dismissive comment about radical in-utero surgery that we barely took in. Feeling lost, broken and confused as we stood outside the room, watching the doctor and sonographer walking away chatting cheerfully together. Those moments of utter despair and desolation as we sobbed out our devastation and grief in the hospital chapel.
How strange the world looked as we left the hospital – everything still going on as normal and yet our world so utterly torn apart. The ice-cream van at the side of the square, school children queuing up, a drunk man asking my husband for a light for his cigarette and attempting to linger for a chat. The relief I felt when he left us alone after my husband firmly and politely told him that it wasn’t a good time. Sitting on a bench in the sunshine and phoning our families with our news, our voices calm and numb. Going to Carluccios and pretending to eat pasta as hubby had an hour to spare before having to go to work and we didn’t know what else to do. My mind racing on the drive home, trying to focus on getting home safely despite my vision all too frequently being blurred with tears.
A day I’ll never forget; a day that was easily the hardest day of my life up to that point. And yet, I knew that even though that day had been almost unbearably painful, there would be worse to come.
Four years on, and whilst the pain in the memory of that day and the lack of empathy at how the news was delivered is something I will never forget; my overriding feeling is one of thankfulness. For although we didn’t realise it at the time, our prayers for hope had not gone unanswered. That throwaway comment led us to question more about the option of in-utero surgery and we were amazed when our team at Oxford offered us the chance to have the procedure in the UK. They had never done the procedure before but we were prepared to accept the risk in order to give our baby girl a chance of life. A miracle moment – the first of many.
Four years on, I watch that little girl laughing and smiling, playing with her toys and chattering away to her little sister. Those big blue eyes that I feared I would never see looking at me are full of joy, that little voice that I thought I might never hear says “I love my Mummy” each and every day and those little hands that tickled me on the inside now hold tight to mine as we walk outside. There have been many dark days in the last four years; many, many hard moments and the road has been intensely painful at times with more dark moments waiting ahead. But then I look at my beautiful girl and know that I would walk every step of that road again and again just to be here with her and know the infinite blessing that comes with being her Mummy.
I can’t even imagine how utterly devastated you must have felt and what you have been through since. It’s so lovely to hear the positive sides of your post. I really really hope there are very few dark days and lots of lovely positive ones ahead xx #ShareWithMe
Thank you so much Sam – we have had a lot of positive days along the way and fingers crossed there will be many more to come x
What an amazing story. You brought me to tears. Well done for following your intuition and sticking to what you felt was right. #sharewithme
Thank you – I am thankful each and every day that we picked up on that throwaway comment and acted on it.
Thank god you didn’t listen. It’s all black and white for the medical profession. There is no black and white for parents. What a beautiful little girl xx #sharewithme
Thank you Emma x
Ah hon I’m.in tears. What an amazing story and just miraculous that she is here with you now, growing by the day. It sounds horrific and to be told in such an uncaring way is just awful. Wow, thank goodness for modern medicine and Drs who are willing to take a chance to help a baby survive. Xx
Thank you Caroline – I am eternally thankful for the wonders of modern medicine and those fab team of doctors that were willing to take that risk and give Jessica a chance x
Oh honey, there really are no words. Sending love and hugs your way. You are doing an amazing job 🙂
Thank you Renee – it’s days like this that I am reminded of just how lucky we are x
I’m so happy for you guys that this story had such a good ending. You’d think doctors would have a little more empathy training, right? Surely there is a need for it every day!
#sharewithme
Thankfully most of the doctors we have encountered have been wonderful – it was just this one who was a bit too detached. The fact that he mentioned the in-utero surgery takes a lot of the sting out of the memory of the lack of empathy – he gave us that tiny glimmer of hope, even if we didn’t know it at the time.
Oh Louise, what a day. I was in tears reading this and I am so very glad that you got your miracle.
I must admit that it always shocks me that some medical professionals can be so detached. (I know that they have a job to do and can’t get overwhelmed by everything) but some empathy should be always present.
Big big hugs to all of you, and how strong and inspiring you and your husband are.
Thank you Jenni – thankfully this was the only doctor we have encountered on the way who was so detached but I will always be thankful for that throwaway comment he made that led to the miracle we were so desperately praying for. Anniversaries like this make me so aware of just how lucky we have been and how much we have to be thankful for x
Wow! What an amazing story. I am glad everything is ok now, and you’re enjoying every moment.
Thank you – it is wonderful to see how well she is doing these days.
Sending hugs! Thank goodness you didn’t listen to the hospital! Look at her now….She’s a little star!!
Friday the 13th’s are the worst. It was a Friday the 13th in February 2009 we got told there may be a problem with my youngest girls heart when she had the surgery to fix her broken finger….What a can of worms that opened….lol
Thank you Kim – sounds like Friday 13th was kind of lucky for you in a strange way too as that broken finger helped save your little girl’s life too. I am sure it certainly didn’t feel that way at the time though anymore than our Friday 13th news did for us x
What a moving post and horrible thing to have to go through. But what a positive outcome – your beautiful daughter! Wishing you all the best for all challenges that are maybe still to come, but I’m sure that you’ll find the strength to get through them all, as you have already achieved the biggest challenge of them all! #sharewithme
Thank you Isabella – being here and seeing my beautiful girl growing up is something I am incredibly thankful for and I know that we will get through whatever lies ahead somehow.
Oh my gosh what an amazing little girl you have now and well done for having the faith to stick to your guns, that’s incredible. Lovely lovely post xx
Thank you – anniversaries like today definitely make me realise how much I have to be thankful for.
Oh Louise I hate that you were treated so poorly at the scan but thank goodness that comment was made and the team at Oxford were prepared to give your beautiful girl a chance. You’re an inspiring family xxx
Thank you Hannah – that throwaway comment went a long way to taking the sting out of the lack of empathy – without it we wouldn’t be here now and the team at Oxford were amazing – will always be thankful for them being prepared to take that chance.
Good for you. You are truly blessed.
Thank you Betty – I am so thankful for everything that has got us this far.
The Mother says – Am reading this with a tear running down my cheek. You wrote this post so brilliantly, I almost felt as if I was there when you were told. How awful for you to be told like that but how amazing you guys are. Your daughter is beautiful and I reckon that someone’s been watching down on you during this time. Beautiful post xx #sharewithme
Thank you – I definitely agree that someone has been watching down on us, we have been so very fortunate with how things have turned out x
It angers me that medical staff can loose their compassion when delivering bad news. A very very different situation (early miscarriage) but I have had bad news concerning a pregnancy delivered very abruptly and it just added to to the whole devastation.
I am glad you chose the options that felt right for you and your little lady is there to sit and smile in that lovely photo 🙂 All my best wishes.
Oh I am so sorry that you also had bad news delivered in such an uncompassionate way. The way in which bad news is given can make such a difference. Thank you for your lovely comment.
Thank goodness you fought for your daughter it must have been an awful time #thankfulthursdays
It was, but she is here today and that is all that matters x
Such a beautiful story of true thankfulness.
A lovely ending to the nightmare you went through with your gorgeous little girl by your side.
#ThankfulThursday
Thank you Lianne – so thankful to be where we are now with my beautiful girl here and doing so well 🙂
There must be something in the Friday 13th thing – my eldest son was born on that day and as you know we had a fairly tricky start to his life due to an undiagnosed heart condition. It is difficult to forget something like that but you’ve all come so far since then and you must be so proud 🙂
How strange that Friday 13th was also significant for you too. So glad that your son is doing so well now too – as you know, those early days are hard to forget but seeing our children grow and do so well is wonderful. Am definitely very proud of my little heart warrior 🙂
Look at her smile! So worth not giving up to. Its so surreal to read this when I am looking at her now and she is so happy! Thanks for sharing. #sharewithme
Thanks Merlinda, it is a bit surreal looking back when she seems so well now.
What an incrediaabky emotional journey you have been through, your so brave and do such an amazing job X
Thank you – it has been quite a journey but so nice to be at this point in it! 🙂
I’m so happy you were able to have the surgery and that you had such a brilliant team at Oxford. Your daughter and your family are fighters xxx
Thank you Tinuke – she certainly is a little fighter! 🙂
I love this post Louise, I think that it is inspiring to other mums who may not realise they have a choice and that the Professionals can be challenged. Much Love xx
Thank you – hopefully sharing our story may help give hope to other families in a similar situation.
So beautifully written and powerful. You are so strong and lovely to hear your story. Thank you so much for linking up to Share With Me #sharewithme
Thank you Jenny, always a pleasure to link up.
Amazing story of life, bravery and determination – keep going ! #sharethejoy
Thank you – it is amazing to see how well she is doing now 🙂
Read that with goosebumps. I’m sorry to read about your difficult experiences but so happy to see such a lovely smiley happy girl at the end of the post 🙂 #sharethejoy
Oh Louise, what a day. And how uncaring of the doctors, though I am glad that they made that throwaway remark and you have the miracle sat with you today #sharethejoy x
It certainly was quite a day but I have so much to be thankful for as a result of that appointment – Jessica certainly is my little miracle 🙂
Thank you for sharing your amazing story honey – that chance mention that led to so much joy for you despite the sorrow, stress and pain. May there be many, many more years of joy for you all and thank you for linking up at #sharethejoy xx