... are words that no parent wants to hear, after making the impossible decision to terminate a pregnancy.
Last week I was struggling with being in the midst of a Sjogren's flare up and so I joined an online support group. I posted the story of my diagnosis, including the discovery of Anti-ro/la antibodies in my body and the loss of Holly. Scrolling through the many replies, I noticed a picture of a little girl. Her mum had written that her daughter also had a diagnosis of complete heart block at 20 weeks but made it to 36 weeks with a heartbeat of 50 bpm. Her daughter had surgery and was now happy and healthy. She told me that she was advised that her daughter wouldn't survive pregnancy. She had written in her comment 'but I refused to give up.'
She refused to give up. Is that what I did? Did I give up on Holly?
Like a weight of a ton of bricks on my chest, I am sat there looking at the picture of this little girl with tears falling down my face. My 8 week old son is lying on my lap looking up at me and all I can think is, 'is he not suppose to be here because Holly would have survived?'
Not once since losing Holly had I worried that we had made the wrong decision. I was somehow able to think practically during her diagnosis. I wanted Holly. I wanted her so much but her quality of life was more important than my want for a child. On her final scan we were informed by four consultants that she was already dying. I agreed with them. I didn't know of any children who had survived such a poor prognosis, I was putting her before what I wanted.
But with the words 'I refused to give up' ringing in my ears, darkness was clouding my head. Could Holly have been the little girl in the picture? Was I a coward to not give her a chance? Did I bring this life on myself? Will my grief now become this horrid journey of guilt and regret?
After Holly died, I made a promise to myself that I would not live a life of anger over her death. I always said that I would chose to share her with love and not hate. If I was going to have to live a life without her, then I had to put my life to an honourable use by sharing with love to help others.
It has taken me a week to get back on track. I didn't want to journey down a path of regret and 'what if's'. Teetering on the surface, I could feel how dangerous it would become. Whilst the little girl in the picture is surviving, I have to remind myself that her heart was not Holly's heart. The damage to her heart was not the same. I have to continue to believe that we did the right thing for our baby.
I have always thought that whatever parents chose to do when faced with such a horrid dilemma is brave. It is a brave thing to just keep on going, down whichever path that may be. No route is easy and the decision made is never black or white. I talk about our experience because so often terminations are associated with unwanted pregnancies and negativity. Whilst that may be true in some circumstances, I need to shout that for many our babies were wanted just as much as any living baby. I need people to understand that terminating a pregnancy is not an 'easy option' and that it doesn't mean we gave up on our babies.
This is not a post written in anger but just a need to respond to those parents who bravely continued with their pregnancies. I need to tell you that I did not give up on my daughter. I did as you did and made what decision I felt was right for my child. No two hearts at the same, our diagnosis was not your diagnosis. Please be gentle with your words, we bear the weight of heavy hearts.
I write this a week later, looking down at my 9 week old son whose entire being is dependent on me. I chose to not be swallowed into a dark grief and I promise that he will never fear that he shouldn't be here. He was born out of his parents love for protecting his sister from pain. He lives for Holly and because we did our very best for her.
I am a parent. I would never and will never give up on any of my children.
On the 7th September 2016 at 25 weeks gestation, Holly was born, still after a battle with complete heart block.