We’re not shy about awareness here and our hearts are often open to the reality of life, regardless of what it may bring.
I wanted to write about Holly, the quietest member of our family who was born to give us an appreciation of the rain and an ability to see the sunshine through the storms. She sure did rock our world and nestled in our hearts to be remembered forever in every delicate, fragile and beautiful detail.
I’ve thought long and hard about this post. About the realities of what we faced and the incomprehensible most ultimate decision that we’ve ever made. And hopefully will ever have to make as parents.
Our daughter entered the world on the very same day she left it.
Holly was our 5th child. Planned for and very much wanted. My pregnancy was no different to any other. I had sickness, I craved, I bloomed. I marvelled every single day at the evident life growing in my belly.
Our 12-week scan came and brought with it relief and an added wonder of the additional life that was going to be joining our family. We told everybody and embraced what was to come and looked forward to our anomaly/gender scan a few weeks before Christmas. Having two boys and two girls already we’d decided to find out the sex and involved the kids every step of the way during the miracle of making a life. We built excitement every day and hid nothing from them. They saw the ups and equally the downs of pregnancy. Everything that Mother Nature provided us with we shared with them.
We all watched as my belly grew. We poked and prodded, talked to and sang. We made plans, and bought clothes and teddies. Like all other pregnancies, it was a beautiful, happy and exciting time. As pregnancy should be.
But that changed in the blink of an eye. The world as we’d known it, our naive bubble that we’d lived in was burst and the realisation of the fragility of that bubble that had given us a blissful ignorance was instantaneously shown to us. A harsh reality of life slapped us in the face. Instantaneously stopped everything in its tracks and threw our world upside down. Our bubble didn’t just burst but seemingly shattered into a thousand harsh pieces which we were left to pick up.
It was the beginning of December and we’d spent a few months willing the time away to get to our 20-week scan. The hospital was busy and our appointment ended up being made for 22 weeks gestation. That extra two weeks meant our chances of determining the gender were much higher and the scan would fall closer to Christmas, so we weighed heavily on it falling at such a special time. We decorated the house for the festivities, hung fairy lights and tinsel galore, planned, wrapped and generally threw ourselves into the excitement of the beginning of December and the official kick-off of those celebrations that would come from the peek into the comfy world and snugness of the growing addition to the family.
Our expectations were so very far away from reality.
We knew the routine. We had our tokens for scan pictures. I’d drank, drank a little more and then drank some more again – til bursting point in the hope of a crystal clear view of our baby as we waited in the hospital for our appointment. The kids all waited at home for the news. It was excruciatingly exciting.
It was plain sailing to that point and then the storm viciously washed over us.
I think I knew almost immediately something wasn’t right. I’m pretty sure hope just left me there and then. Maybe an instinct that suddenly hit me. Who knows.
The sonographer had only briefly started her examination when she announced to us that she needed to gain further opinions from a colleague. She was stern, ungiving of opinion and quite sombre in retrospect as she turned the monitor off and left the room.
She was right to be. How the hell do you tell parents at such a beautiful time in their lives that things aren’t right? Things are not ideal. Mother Nature had made us one of the heart-wrenching statistics you read about in the books.
She confirmed we were having a girl along with the reality that it appeared she had extensive water on her brain and evident problems with her heart amongst other things that would be confirmed later. Things were absolutely not what they should be. We took it in but absorbing it was hard. The screen showed a different picture to us. It showed our daughter. It didn’t show the harsh reality or the severity of the situation. It showed her heart beating, her arms and legs kicking. It showed a baby on the screen no different to the way all her siblings had looked in the past. On the outside she looked perfect but on the inside she was poorly.
We were examined by the sonographer’s colleague and shown to a side room in the hospital to wait. There we were told of the severe prognosis. Our daughter was to be born brain-damaged and disabled
It was a very bitter and hard pill to swallow. We couldn’t run and hide. There was no sweeping under the carpet. We couldn’t ignore it and time was not something we had. We were already at 22 weeks of pregnancy and the situation would change at 24 weeks and decisions would be different. At 24 weeks the life of a gestational baby becomes about the right to life and sometimes based on the severity of prognosis that right to life can mean the difference between suffering and not. Putting a time frame on decisions regarding our daughter’s life was heart-wrenching. It seemed so wrong and unfair, almost cruel. But it was a reality we had no option but to face it.
We faced the option of ending our own child’s life.
We were given details of our options and an appointment a few days later to gather a more detailed scan within another hospital but firmly told that regardless of the more detailed scan it was very evident that things were severe. There were no percentages to consider, our percentage of severity was 100%.
We returned home in a blur. Under the cover of darkness with Christmas lights twinkling and the kids eager to open their advent calendars, learn of their new brother or sister and commence Christmas…. It was so very different to what we’d planned.
I can’t explain how my brain hurt. How I craved to switch off. How every kick and movement within me broke my heart that little bit more. I couldn’t understand how the world could appear so normal when it had crumbled around me, within me.
We were truthful with the children. We told them the baby was very poorly. We did not hide from them the realities that life brings. It was a very sad time.
The next few days whilst we waited for a second opinion we again lived in that bubble but with naivety shed. I wasn’t heavily pregnant but was showing if I had tight clothes on. My pregnancy could have been mistaken but I suddenly had an overwhelming urge to point out to people I was having a baby. I wanted people to understand how proud I was to be carrying a child. I wanted to regain the excitement and wonder that had been lost.
A few days later we met for another scan in the hope of a miracle, a percentage we could deal with, a different opinion. But it didn’t happen. If anything, the prognosis was delivered worse than before.
We were told our daughter would almost certainly die during childbirth or very shortly after. She would have no quality of life and be expected to be in a vegetative state should she survive. She would not talk or walk. She would not be able to see or hear. Her movements on the screen were involuntary reflexes. Her brain would not function and was severely damaged along with other major problems. In the lowest case scenario it was evident she would have no quality of life and to be born into this world would bring with it pain and suffering and non-communication, should she survive which was not to be expected.
Somehow the severity of what we were being told was a blessing. We were not given any ‘maybes’ or ‘it’s workable’ or ‘corrective’ hopes. The doctor was blunt. He gave us detailed findings of what would be based on the scan. He didn’t need to detail what additional problems our daughter could face. The harshness of what was already apparent was sadly ample.
We didn’t want our child to suffer. To bring her into a world with no hope but to die would be painful for her and painful for her siblings. Mother Nature had been cruel and we found our option was then to be cruel to be kind.
We choose to terminate. The most out-of-context word I have ever come across in my whole life. We terminated our child. It seems such a wrong statement. A horrid and harsh descriptive word of a choice we made. We let her go. We stopped her suffering. We gave her love with every morsel of our hearts and broke our own in doing so.
We don’t need judging. We stand by our choice. We don’t take guilt with us. We terminated out of love and an understanding that life isn’t given to be partaken by suffering, solitary pain or with zero quality. Our daughter did not deserve that just because we could not face to let her go. To keep her would have been selfish.
On 10th December 2006 at 23 weeks pregnant I was booked in to give birth to our child. I was induced with a pill that would bring on labour and it was expected that our daughter would pass away during the birthing process.
Labour has always come easy for me but this was the hardest, saddest day of our lives.
With the support of my fiancé our daughter entered the world that evening. She did not cry. She had already gone. She was perfect. She was tiny and fitted in my hand. She looked perfect and it was so very hard to understand how she could look so perfect but be so poorly inside. Her eyes were still fused and it broke my heart that we’d never see them. The thing that stays with me most is the temperature of her cheeks on my lips as I kissed her and tried to imprint those moments with her on my mind in an attempt to never be forgot.
I have not forgotten.
We spent the next 24 hours with her. We dressed her in dolly clothes which we had heartbreakingly shopped for in Mothercare after our final scan.
We introduced her to the children still holding on to the belief that showing them the realities of life would help them gain understanding within their own lives as they grow. We gave them choices but were never forceful.
I returned home the next day leaving our baby in the mortuary. We were greeted with the normality of Christmas lights but with the complete randomness of the Salvation Army brass band outside our house playing Christmas Carols. A contrast of both sadness and poignancy.
Picking ourselves up just two weeks before Christmas for the sake of the children was something we had no choice but to do. Carrying on like normal when we were miles away from normal and the only thing we wanted to do was curl up was hard, but we had to. School nativities were attended, and carol services and Santa visits were all done. We received season greetings with condolences.
We had a postmortem a few months later that confirmed again to us that the decisions we had made were right but the reality was still an awful confirmation. There was never any reason for why things went wrong. We were just a statistic. Something as delicate and intricate as growing a life is an unbelievably complex thing and it doesn’t always go to plan. It’s a sad but harsh reality of life that we naively take for granted until we find ourselves in situations that remind us in the most cruellest of ways.
Four months after our daughter entered the world, we arranged her funeral. Her coffin was no bigger than the bouquet of flowers it nestled beside the back of the hearse. We had a service, had readings and played songs in the chapel.
Our daughter read the words I had written:
I feel the wind blow, for you.
I watch the raindrops, for you.
I feel the sun shine on my face, for you.
I taste snowflakes on my lips, for you.
I hear the birds sing, for you.
I see the trees dance, for you.
I scoop up a flower, for you.
I make a daisy chain, for you.
I tread the green grass, for you.
I footprint the sand, for you.
I hear the leaves fall, for you.
I smell the dawn break, for you.
I feel the cold sea, for you.
I watch the stars shine, for you.
I feel the moon touch my dreams, for you.
I whisper a Christmas wish, for you.
I’ll hear brass bands play, for you.
I’ll smell chestnuts roast, for you.
I’ll remember for always, for you.
My heart beats
We said goodbye in the week she was due to enter the world.
Holly was never a result of anything we had done wrong. The way she touched our lives could never have been predetermined, predicted or prevented. She was just a path that Mother Nature had directed us down. She was a sadness that was given to us to install an ethos of grasping life with both hands. Valuing everything we have and being thankful for both the sunshine and the rain and each day that we have.
We still live life in that bubble and it does bend and squish a little sometimes but we live with a hope that it will never be shattered in such a way again.
She’s still there. Nestled in our hearts and fleeting through our thoughts always. She is dancing on the breeze and playing within the sunshine. She is the twinkle from a snowflake and the warmth in summer rain.
We miss her every day.
We respect everyone’s opinions and decisions about things they face during their lives. We do not judge.
Please respect our decisions too and keep judgement to yourselves.
And the thoughts and feelings that we faced in The Pregnancy Limbo That Comes After Miscarriage.