It's a funny sort of thing when your life changes in a heartbeat. Not a funny that makes you laugh or even resembles some kind of joke but more the sort of funny that can't ever be explained. The funny that has no reason or belonging but more a random turn of events.
You make think that you have had your fair share of battles but then out of the blue the biggest battle you may ever face knocks at your door and you have no choice but to open it. Bang your life has changed and whatever path you take now you know nothing will ever be the same.
This time last week I thought that the hardest battle I'd had was that of my daughter and her reflux. With her I entered the world of reflux and thought myself rather a pro at the topic having seen the ins and outs first hand. Not in a million years did I think that I would have to deal with some thing much worse than that and yet again enter a world that I know nothing about and one that if I am honest scares the crap out of me.
A few days ago I was lying in a scanning room in London having been asked to go there by my local hospital after they were concerned about what they had seen on my baby's 20 week anomaly scan. It had been a hard few days waiting for the specialist scan and google saw a fair share of me that weekend but despite it all I clung on to that glimmer of hope that sits inside the heart of everyone of us.
The London sonographer had been scanning baby's heart for a good 30 minutes and she had remained quiet throughout it all. Mine and my husbands eyes were glued to the monitor trying to figure out what it could all mean. I kept looking at the sonographers face, knowing she was deep in concentration but trying to assess every inhale, exhale and frown. The minutes slowly passed and then the consultant came to scan me. Again, another 30 minutes of pure silence apart from hearing the occasional glimpse of our baby's ever so slow heartbeat. I knew it was slow, I knew my husband knew it was slow and I'm sure as the minutes passed my grip was getting gradually tighter around his.
Suddenly we told the scan was over and we needed to move rooms to discuss the findings. My legs felt like jelly and when the consultant explained that she needed to get the nurse too, I broke down, knowing that never means good news. We sat in that room for what felt like eternity, trying to focus on anything to keep myself distracted until they returned back with the news that no expecting parents ever wishes to hear, 'I have seen multiple abnormalities with your baby's heart.' In that second, when those words are spoken it changes your entire life. It changes who you are. Our lives have changed in a heartbeat.
Our little fighting baby has complete heartblock. Our local hospital consultant has only seen this 4 times in her entire career and unfortunately it seems to have picked us to be the next one for her. I still don't understand it all fully but I gather it means that her atriums and ventricles sadly don't work together. This is why her heartbeats at only 60 bpm, actually slower than mine. She would need a pacemaker shortly after birth and for the rest of her life. They suspect that she also has a VSD, a hole in her heart between the two ventricles and also a pulmonary stenosis, a blockage in the artery that goes to the lung. These would most likely require open heart surgery, which of course come with their owns risks.
The doctors sounded hopeful that they can help her, at this moment in time but of course they don't have a crystal ball and she may not survive pregnancy. Sadly, she also has fluid surrounding her heart, should this spread to other organs then the chance of survival is slim. The news today is that the consultant suspects this fluid will spread and my heart breaks for what this will mean.
We still don't know much about it all and we still have a million questions to ask but whatever happens, it will be so hard. My heart aches with us having to take one day at a time. It aches for what my pregnancy has now become and it aches with worry, fear and frustration. Most of all it aches for this tiny person that is fighting so hard to survive inside me. She barely moves but I know she is there, heart beating slowly and just trying as best as she can.
I am trying my hardest to cope and find out as much as I can about her heart. I am speaking to the people who understand having experienced this themselves but the truth is just nobody knows. The only truth I do know is that what ever happens I will find we will belong into one of two groups and quite frankly, I wish I could belong to neither.
When your life changes in a heartbeat its funny because it doesn't seem real. It seems too ridiculous of a situation to be happening, something which happens to other people, not to you. I don't understand what the lesson to this life story is yet and I wish I didn't have to find out.
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On the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block.