The Daughter That’s Nestled in Our Hearts

IMG_8327.JPGWe’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.

Silently.

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
for you.

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.

x
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Please also see For The Better, Grief Changes You and Take a Look, Appreciate and Smile.

And the thoughts and feelings that we faced in The Pregnancy Limbo That Comes After Miscarriage.

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35 Comments

  1. I lost my son matthew at 10 days old 19 years ago , though it seems like yesterday , he was born with a condition called hypoplastic left heart syndrome , he was only born with half a heart, like you we only found out at the 20ish week scan….he is very much a part of our family .He was my third child and I had two more beautiful daughters after and to all four of my children he is their brother…he certainly changed how I looked at life a b d I was truly blessed to have him for those ten days to be able to hold him feed him ect are blessing s many dont have and my live goes out to holly and all your family xxc

  2. This is the most heartbreaking thing I’ve ever read. I’m so sorry that you had to go through this and for the loss of your daughter. Mother Nature can be oh so cruel at times. My thoughts are with you and your family & I admire you for writing in great detail of your experience. I feel that so many people hide away from this subject because of the judgments and the pure pain it brings to many. Xx

  3. This is beautifully honest and horrendously sad, I am so sorry that you and your family had to go through this. Your strength and your zest for life, which is transmitted through all your family days tried and tested posts is awe inspiring xxx

  4. I could have written this myself; this time 4 years ago we faced the same, just a slightly different diagnosis. I am sorry you have been through this, it was the hardest time of my life, as for any parent faced with this. It’s a very emotive topic so I have full respect for you being so public in writing this.x

  5. No one can judge these decisions as they are so personal. For those who want further support or don’t have support, ARC (antenatal results and choices) provide excellent telephone support for those going through this or ever been in this position. Hope this my help someone.

  6. Beautifully written and would have been hard for you to put your own experiences into words. Your children will respect you for letting them see their little sister knowing that she was born sleeping, and help them to accept what had happened too. xxx

  7. What a heartbreaking story. I’m so sorry for your loss and for the unbearably difficult decision you had to take. Your love for Holly shines through in your words. No judgement here, just huge admiration for your strength and honesty xx

  8. My heart goes out to you. I cannot even begin to imagine how heartbreaking it is for you and your family to have lost your darling Holly. Thank you for being brave enough to share this. I hope, in time, the loss of Holly becomes less difficult to deal with. Xxx

  9. I am sat here in tears for you. What a brave post and beautiful poem. So sorry for the loss of baby Holly – beautiful name and I am sure a beautiful little girl. It is very sad if you have faced any judgement, no one knows what they would do unless they have been in the exact same situation. All I feel for you is sadness and admiration for making such a heartbreaking decision for yourselves, but the kind and right one for Holly. I’m so sorry once again and I am wearing my pin this month for all the lost babies, for all of us xx #BinkyLinky

  10. I cried the entire way through this, what a beautiful post. I wish I had the strength to write about my own experiences, but I don’t think I can, even though it’s been years. You’re incredibly brave and strong for putting this out there. x
    #binkylinky

  11. You made a brave, heart breaking decision based on love. I think so you are so brave to share your story. I am so sorry for your loss x #binkylinky

  12. I wsa crying while reading this. Thanks for sharing. A hard situation to be in and I think you made the right decision. A hard decision but a right one. I am sorry for your loss. Again thanks for sharing. #binkylinky

  13. I’m so very sorry. This was truly heartbreaking to read. I can’t imagine, nor can I begin to understand truly how you must feel about having gone through this and having written this for us to read is such a brave thing to do and I’m truly thankful to you for sharing this with us. Thanks for linking up to the #BinkyLinky

  14. Oh my goodness, I am crying reading this. I’m so sorry you and your family had to go through this. How absolutely heart-breaking. I can’t even begin to imagine what you went through but I admire your honesty, openness and strength in talking about it. I had a miscarriage, which we discovered at our first scan at 13 weeks and it was unbearably painful. Like you, it happened just before Christmas and it was such a difficult time when you are “supposed” to be happy and festive. Losing a baby in whatever way is indescribably painful but it’s so important to talk about it, to raise awareness and provide support to other people going through similar. Much love to you and your family. xx #binkylinky

  15. This is such a beautifully written and honest post, that gives a small insight into your life and how Holly changed it. It is so unfair that anyone should have to go through something like this, I admire you for writing this and sharing your experiences

  16. It will be 40 years this New Years Day since we lost our baby girl Jody having been born prematurely because of pre-eclampsia. It will also be 33 years since our daughter Nicola was still-born at 33 weeks of pregnancy. Despite the passage of time and having two sons who we love dearly it is still raw and painful and we miss them. Reading your post made me cry, losing a child hurts whatever the circumstances. Our hearts go out to you.

  17. Thanks for sharing your story so many of us have to speak this way because family and friends are not always able to understand. It’s so dreadful to deal with it affects us all our lives and never goes away. It was 1971 for me and could be today it’s still so real. Love you Janine.XxxLove my two grown up children as much and very grateful for them too.xx also my grandchildren who are all just wonderful.xxx

  18. I came here via your instagram and I’m glad I did. What a post. I wanted to hug you so much whilst reading this. I am so sorry for your loss. X

    I have lost children, although my medical records disagree. I was beaten during pregnancy by the “father” and lost. I wasn’t permitted to see doctors so my first pregnancies were not recorded but I knew. In a way I’m glad they were early losses but I still think about them.

    It was made more “real” by the student midwife who was there when I was giving birth to my son. She knew somehow my son wasn’t supposed to be my first child. She said first live born child, then quickly apologised with her facial expression. I cried, it made me happy someone knew.

    I had a miscarriage between my sons (to be clear my current partner is not the scum who beat me) only 2 months but this didn’t hurt me emotionally…. I got pregnant the next month with my second son. It’s like that was meant to happen.

    Thanks for sharing this post again, giving me a chance to talk. X

  19. Thank you so much for sharing this, we lost our first daughter Nicola to stillbirth and never a days goes by without her presence being felt,our children feel they have their very own angel. Time was different nearly 40 years ago, we were not allowed to hold her a door me that leaves a huge hole. Your recollection of Holly”s life and the supreme sacrifice you made to save her suffering is heartrending in every way, and you are very brave and generous to share such precious memories, this last few days with little Abigail must have been made all the more tortuous for you given Holly’s release and the time of the year. Thank you and lots of love

  20. That was so sad. I can’t look at those tiny little footprints without a tear. What an awful decision to have to make and how brave of you both to choose the best for your daughter. Thank you so much for sharing this with us.

  21. As everything you write, that was so beautifully worded x losing a child no matter what age must be the painful thing x Love to all mummies who babies have Angel wings xx

  22. No judgement but huge admiration. Such a heartbreaking decision for you both, but made out of love for your daughter. She is always with you x

  23. Thank you for sharing your story. I have a sister-in-law who had to have a late-term abortion (after losing the last baby to still birth.) and a friend who just went through this last month. I am sorry for your loss but, in awe of your bravery.

  24. Thank you for sharing your story of your beautiful daughter. I sit here with tears in my eyes.

    Thank you for allowing us in to your heart ache that so many suffer in silence, and for sharing the
    true meaning of Holly’s house. Your sweet little girl.

    My deepest condolences I wish I could send you a hug ❤️

  25. You write so beautifully, tears running down my face, oh my goodness I think I love you and your family even more now 💔I realise how lucky I am that my two tiny 27week old twins both pulled through a rocky start! Thank you for sharing and making me stop and think ❤️

  26. Some background to me. Grandmother to 8 but 2 of which are angels and like Holly didnt make it into this world. I found this piece written about your Holly so beautifully written and moving. In these times where the USA have gone draconian your story could not have been a better example of how women should be allowed to make their own choices, and especially when babies would struggle with major disabilities. Respect to you for your decision.
    I follow you on Instagram because you show family life as I would want my grandchildren to experience. You are a credit to your family in all you do for them.

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