Saturday 27th August

After a restless night‘s sleep, I woke up, expressed and got ready for the day. I hadn’t worn my Selfish Mother jumper yet and today felt like the right day. When I was pregnant I had seen on Instagram ‘Mother_of_daughters’ wearing one. I couldn’t wait to buy one when I became a mother to Charlotte and Esme. I treated myself when I registered their births. I put it on with pride. Despite nearly feeling total despair, I hoped and prayed that her head circumference had stayed the same. Charlotte and Esme had overcome so much and I was a very proud Mother.

I had breakfast and took our dogs, Hattie and Mila out for a walk, planning on phoning the hospital when I returned. During the dog walk I took a selfie with the dogs and posted it on Facebook, with the status ‘I can do this’ #feelingstrong #beautifulday #selfishmother. Looking back at this picture, I realise I had a mixture of emotions when I posted it; I was wanting to show the world I could do this; I wanted everyone to see my brave face and I needed the support from others to get me through the day. I phoned a close friend to find out about trade marking the name ‘Campbellinas’ so I could get started on my premature baby clothing range. My mind was working overtime and wanting to avoid thinking about how the day might progress.

Two minutes after phoning my friend, I couldn’t wait any longer. I had to know if there were any changes.

Charlotte’s nurse answered the phone. My heart was beating so fast. She told me Charlotte had had a great night, her oxygen requirement had been reduced again and she continued to tolerate full feeds. When I spoke to Esme’s nurse, she updated me that she had been stable over night and was wondering what time Connor and I would be coming in as the consultant wanted to talk to us. I wanted her to tell me why; was Esme ok? But she couldn’t tell me. I hung up and tried my hardest to hold myself together. As I reached the last field I tried to continue walking but couldn’t, I had reached despair, my heart felt too sad, too heavy, the lump in my throat was too big, I felt sick and numb; I knew Esme’s head circumference had got bigger. I knew what the consultant was going to tell me and I couldn’t bear to hear it. We had never been asked to come in before to talk to the consultant. What had happened over night to my baby girl? I couldn’t walk any longer, I couldn’t hold myself up, I felt dizzy and was sure I was going to be sick. I sat down in the field, put my head in my arms and cried. I cried and cried. Tears of despair. They were sad, heartbreaking tears, coming from deep in my heart, a heart which had shattered. I’ve never felt my heart physically hurt before. I looked up to see a man I knew from the village walking towards me with his dogs. A sense of relief hit me. I wasn’t alone. His two black Labradors ran to meet Hattie and Mila. As the man walked closer, one of his dogs ran up to me and licked my face. His dog knew something was wrong.

I attempted a smile as he got closer and when he noticed I’d been crying, asked if he could help me in any way. He said the least he could do was to get me home safely.  My legs had gone weak and all energy had escaped me. He offered his hand to help me stand up. I explained what had happened, right from my waters going on the 23rd June. As we departed he said, “All you can do is hope and hope and hope.” Hope is what I did.

Recalling this now, that was the biggest effort I have ever had to put into standing up. It wasn’t about getting up and walking home, it was about facing my darkest fears and being there for Esme.

I walked through the gate to find Connor keeping himself busy by gardening. He looked at me and asked “Everything ok?” I told him about the phone call. He threw down the rake in anger and held his head, questioning “Why is this happening? How is this happening? Why is it happening to our little girl?” We locked up and set off for the hospital.

The majority of the journey was in silence. When we did speak, we went through all the positives but kept going back to “How is this happening to us and to our girl?”

We arrived and said “Good morning” to Charlotte and Esme. The nurse went to go and find the consultant to tell him we had arrived.

Esme

The consultant greeted us and we waited apprehensively to be told what to do next. He asked where we wanted to go and acknowledged we didn’t like the Family Room, but this time I felt prepared and we agreed to go in. Deep down I knew what I was about to hear. He reminded us about the ‘Parents and Neonatal Decisions’ research project but completely understood if we didn’t want to be filmed or partake in it any longer.  The project was about supporting the training of junior doctors in talking to parents.  I liked the consultant, I believed him. I knew he would do anything possible to help our girls and would only give us the truth, so I agreed. This was going to be one of the hardest things I could ever hear but if people could learn from it, then it was worthwhile. I didn’t care about the camera or being filmed or how I would react. I just cared about doing the right thing for Esme.

Just before I entered the room, I turned around to the registrar and asked “Is Esme ok?” One last little plea before I entered the room. She replied “I don’t think the consultant would have called you in if everything was ok.” I felt like she had punched me. I walked in, in a numb silence and sat down. My ears, my heart, my body, my tears waiting in dreaded anticipation to hear the news that would break me.

Connor and I sat down on the sofa and I noticed the video camera in the corner of the room. The consultant introduced everyone in the room. There was the registrar, the counsellor and Esme’s nurse, whom Connor and I got on very well with.

The consultant began by thanking us for driving in as soon as possible. He clasped his hands together and leant forward on his knees. He was sincere and said how sorry he was to say that overnight there had been a rapid increase in Esme’s head circumference. She had had another cranial ultrasound that morning and it showed evidence that the ventricle had got significantly bigger and the number of cysts around the ventricle had multiplied. There had been devastating brain changes.

It felt like my world had fallen down on me and crushed me. My heart wanted so badly to hear my baby was going to be ok but she wasn’t going to be. My whole body wanted to scream with pain. It felt like someone had reached for my heart, grasped it and begun slowly twisting it. I didn’t think this would ever happen to me. Even though I saw so many babies disappear I always believed both my babies would come home. That I would be raising twin girls.

In hindsight, I am so pleased we agreed to being filmed. He shared the devastating news that no parents want to hear in a steady, sensitive way. He gave us time to cry, time to think and time to ask questions. There was no rush.

I pulled my knees in close, rolled into Connor’s chest and broke down. I forgot about everyone else in the room and cried. I’d never cried wailing, sobbing, heart wrenching tears quite like this before. I could hear myself crying and the sound was familiar. It was the same sound I’d heard from a mother at her little girl’s funeral. I remember standing at the funeral, listening to the mother crying and thinking “No one deserves this. No one should have to cry these tears. No one should ever have to watch their child being buried.”

From sheer exhaustion, the tears began to subside and I was able to look up. Faces of sadness and sorrow reached me. I looked across at Connor, who had his hand resting on my back and looked into his eyes. I’ll never forget that look. It was so sad, so hurt. The look of someone when all hope has deserted them.

From somewhere I’ll never know, I found the courage and strength to discuss what had happened. We trusted the consultants. I knew they would do anything they could to save Esme and I trusted the information they had given me.

I asked “What happens next? Do we have any options? How severe is the damage?” The consultant explained there was the option to drain the fluid from the ventricle but the brain damage had already been done. Due to the nature of my work as a special needs teacher I felt I had gained some understanding and insight around ‘quality of life’. I went on to ask more questions to help build a picture of what might happen if we decided to drain the fluid. We found out Esme would be severely disabled and have no quality of life. It was likely that she would be in pain, would require a lot of medication and her seizures would continue.

We had to separate our suffering from the decision we had to make based on Esme’s future. Esme deserved nothing but the best. She had fought and overcome so much but this was out of her control. Out of everyone’s control. Esme had given so much to life, she didn’t deserve to suffer. We decided it was only fair to her, to take her off the ventilator.

The consultant explained we didn’t have to make the decision then and we had time to think about it. There was no rush. She wasn’t in any pain. He told us all the staff were really sad to hear what had happened, because she was a very loved girl.

I had one last question, before they left, “Would she be able to meet her twin sister?” He replied, “Yes, of course.”

It pains me so much and breaks my heart, they never got the chance to grow up together and Charlotte won’t remember her twin sister. Forgetting about my pain, why did that have to be taken away from them? I am reminded of the advice from the counsellor: the choice was taken away from us, from Esme and from Charlotte.

We didn’t say much to each other when the staff had left the room. Connor phoned his Mum and Dad and I phoned my parents. My Dad answered, I cried “It’s Esme, she isn’t going to make it.” He broke down, “I’m so sorry darling, I’m so so sorry.” I messaged my groups of friends and family. I phoned my cousin, I couldn’t talk, I just cried. She wept back, “Oh no, oh no, oh Amy, I’m so sorry.” My friend from school phoned, “Aimes, what’s happened? What does your message mean?” “It’s Esme, Doug, she isn’t going to make it.” I was distraught.

Connor and I talked about practicalities. He told me to stay with Charlotte and Esme and he would go home and get some clothes and toiletries.

We went back into see Charlotte and Esme. I leaned against the incubator and my tears began running down the glass, my nose streaming onto the floor and I was holding my breath as I was engulfed with waves of despair. I just stared at my beautiful girl. How could this be? How did she deserve this?

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I wanted to hold my girl. To hold her close to my heart. To feel her skin on mine. To feel her heart beating. The nurse said Esme was fine to come out for a cuddle. I couldn’t even feel her soft breaths of air because of the ventilator but I could feel her body moving under my hands. I hadn’t been able to hold her since the 19th August and it was now the 27th August. I held her so tightly. My arms now ache for that cuddle. I can put my hands back into that position and feel her tiny, fragile body in them. I will never let go of that cuddle.

How could I ever know when it was the right time to say goodbye to my little girl, my daughter, my Esme?

Creating memories

When Connor returned from home with a bag of clothes, toiletries and food, I asked the nurse to help me put Esme back into her incubator. I went over to watch Connor do Charlotte’s cares. He was changing her nappy. As he lifted Charlotte’s legs up she pooed all over the fresh nappy. He found himself in a muddle of poo, wires and baby and called for her nurse to help him. Just as he warned the nurse not to lift Charlotte’s legs too high she blasted poo all over her arm and splattered the walls of the incubator. We all burst into tears of laughter. The nurse had never witnessed such a poo explosion and Charlotte had caught her completely off guard. In the midst of everything that had just happened, there we were standing laughing. It felt so good to laugh. There was never a dull moment with our Campbellinas. From then on, Connor has remained wary about lifting Charlotte’s legs too high when changing her nappy.

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The nurse asked us if we wanted to get Charlotte and Esme christened. Their christening was a day which I had been very much looking forward to.  I imagined Connor and me wearing our best outfits and Charlotte and Esme wearing their stunning christening gowns. I pictured the four of us standing at the front of the church listening to the vicar, being surrounded by our family and friends. I could see our proud smiles as we held our girls in our arms. I was looking forward to framing that photograph. It came as a little shock when the nurse asked that evening if we wanted to have them christened. I felt blessed. I didn’t know we would be able to do that. She went to go and see if the vicar was available to do the service the following day.

Connor and I were staying in the same room we’d stayed in a few weeks back. It was named in memory of a boy, and his family had done a lovely job of making it feel homely. When I previously stayed in it, I felt uncomfortable staying in a room which was in memory of a baby who hadn’t made it home. In hindsight, in the back of my mind I was scared and frightened that that might happen to me. But this time felt different. I felt more relaxed. The room had been put together with love and hope. I expressed and we managed to drink a sugary cup of tea and eat some belVita Breakfast Biscuits. It was the only thing we could stomach. Between us, we managed to phone around our immediate family in hope that they could make the christening. Connor’s family booked their flights from Northern Ireland and my brother and sister and their partners travelled up from London. Those that weren’t able to make it, sent heartwarming messages. I felt so loved to have such a supportive family.

Back in the ward, I asked the nurse if it was possible to hold Charlotte and Esme together.  Before this happened I had a question which hurt so much to ask. I hated myself for even thinking it, let alone forcing myself to ask it. I asked, “Is Esme’s infection contagious? Is there any chance that Charlotte could catch it?” I felt repulsed. It pained me to ask and I broke down in tears. I felt awful that I was now looking at Esme as if she could do harm to Charlotte. It sickened me that I would think that as a mother, to think that of my little girl but I had to ask, to protect Charlotte. I would never forgive myself if Charlotte caught anything purely because of a selfish act that I wanted to hold them together. The nurse reassured me it was fine for a little while and she had already checked with the consultant. Relief and guilt washed over me.

It took Charlotte’s and Esme’s nurses a little while to work out the best way for me to hold them both at the same time. There were many wires to think about. I sat down in an armchair between the two incubators. The nurses got Esme out first and placed her in my right arm. They spent time securing her breathing tube to my shoulder and making sure we were both comfy. I felt dizzy with excitement and could feel my adrenaline starting to pump through my body. I still experience this as I remember the anticipation of holding both my babies together for the first time. The nurses had thought it through perfectly and Charlotte’s tubes and wires reached me with enough slack. As they placed Charlotte down into my left arm, she nuzzled her head into Esme’s shoulder. It was as if they had never been apart. I cried tears of joy and sheer happiness. Nothing in my life had ever felt like this. From the moment I held them together, time seemed to slow down, everything relaxed, everything felt right.

Connor and I spent the evening with our girls in our arms. My heart melted when Connor held them both. I was so proud of what an amazing Daddy he was to Charlotte and Esme. I watched with love and admiration as he held them securely, spoke to them softly and looked at them both in wonder. At long last we were able to enjoy time together, as a family; a Mummy, a Daddy and beautiful twin girls. We spent hours holding them, reading them stories, swapping the girls over. In the end, we reclined our chairs and both fell asleep, I was holding Esme and Connor was cradling Charlotte.

Even though I knew we were saying goodbye to Esme very soon, my world felt happy. My babies were where they should be, safe in their Mummy’s and Daddy’s arms. My life finally felt complete, my heart felt whole, my arms felt full. Today I feel grateful for that opportunity. Although my arms often feel half full, I know I will always have those beautiful memories buried safe in my heart.

The beauty of Esme was we only saw her as a perfect baby. To look at her she was so beautiful and peaceful. It was hard to believe she was so poorly. She had come so far and overcome so much.

A nurse once said that it made it harder to believe what was happening as she looked so well. I see it as a blessing that she looked nothing but perfect. She was my strong girl and the Esme who I know before she was taken ill by a horrible disease. I still feel so blessed that her suffering wasn’t drawn out and I am able to remember her for who she was before her illness took over.

Throughout the night the question that kept playing heavily on my mind was, “How will I ever know when to take my baby girl off the ventilation?”

How do I make that conscious decision of when to end my daughter’s life? Yes, I have all the advice from the consultants, she is severely brain damaged, she will have no quality of life, she might make it to the age of four, she will very likely be too poorly to go to school. But at what point do I say it’s time to take her off the ventilator? I know it isn’t a forever goodbye as she will always stay forever in my heart and engraved in my deepest memories. I trusted the consultants 100%. They had done nothing but the very best for my girls and I believed them with all my heart. My girl had fought through everything, shown nothing but courage, love and bravery but this time it was too much for her. She had shown how hard she could fight when both her lungs had collapsed but this time it wasn’t in her control. It would be unfair to allow her to continue this battle. She didn’t deserve anything but peace.

But as a mother how could I let her go. How could I let her go knowing that I would never get to hold her again, to feel her soft skin, to feel her soft breath on my cheek, to see her angelic face, her toes wriggle, to see her big beautiful eyes gazing into mine. But I knew I had to. I had to, to be fair to her. I had to forget the pain I was going to suffer and make the right decision for Esme.

Was this what love was really about? About setting someone free? I had to do it for her. I would do anything I could to save her and rid her of this horrible disease but I couldn’t. No one could. It was out of everyone’s control. The cysts were rapidly multiplying and everything was getting worse.

The pain of remembering these struggling, heartbreaking thoughts hurts me so much. My arms long for my little girl. To see her and hold her, just one more time. But I can’t. I have memories which help keep me strong but they don’t take away the emptiness, the pain, the longing.

That night, Connor and I held each other close. We planned after their christening, after all her family had seen her, to take her off the ventilator.

9 thoughts on “Saturday 27th August

  1. Amy you are a wonderful writer and tell your daughters stories so beautifuly. Your blog has made me smile and cry. You are amazing and both girls are lucky to have you as their mummy.

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  2. Heart breaking. I can’t say I know how you felt at the time making the decision about Esme, but when I gave birth to our first little boy, there were difficulties at the birth which left him with brain damage we didn’t have to make the decision you had to, our little boy died when he was 6 months but knowing he wouldn’t have had any quality of life didn’t make it any easier for a very long time & even now I wonder what if!

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  3. Amy you and Connor are amazing and thank you for sharing your story. It brought back lots of memories for me, my family are adults now but I had a two prem babies and one born with gastroscisis who spent 6 months in the neonatal unit at the LGI. My experience spurred me on to do my nurses training . Good luck with the Cambelina charity and if I can help in any way please get in touch.

    Liked by 1 person

    1. Hello Keren, thank you so much for your kind message. I found the neonatal unit such a special place and when Charlotte came home I often thought about becoming a nurse. The staff really are incredible. Thank you, I really appreciate it. Lots of love Amy xx

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  4. oh my dear… that is soooo sad. this must the worst pain imaginable. i cannot offer any words… i have none. nothing seems to fit, or be enough. i have to commend you on sharing this… these deeply personal moments and thoughts. there may be others out there that will find comfort in your words, knowing that they’re not the only ones going through such a traumatic time. you and your husband. oh my goodness. my heart breaks for you both, and Charlotte. little Charlotte. sending much love and light to you all, esp. little Esme. you’re all in my thoughts xxxxxxx

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