Alma’s story

Seven months ago we ended our unborn daughters life. She was a day shy of six months in the womb when I gave birth to her at one minute to midnight on the 1st of December 2014. I miss her every single day.

Jon and I were sat waiting in a pub in Liverpool to see Neil Young play live. Six hours earlier we had discovered I was unexpectedly pregnant.

We attended a routine anomaly in Manchester. I had miscalculated times and realised I needed to rush from work, always keen to walk everywhere even when pressed for time. As we sat in the waiting room I drank endless cups of water as I had been instructed, I was doing everything I was supposed to, following the rules, being ‘good’. 

We were eventually ushered in for the scan and I lay in dimmed lights as the midwife passed what felt like a telephone over my swollen belly. The screen became clear and we saw our baby, growing and jumping around like a frantic Mexican bean.

The midwife told us that she couldn’t quite see the heart, as the baby was spinning around in such a frenzy.  She went to fetch a second opinion. I blamed myself for rushing to the hospital and overexciting the baby. I made a note to take taxis from now on.

The second midwife couldn’t see the baby’s heart clearly, so I was sent off to have a 30 minute stroll. On returning, there was still no joy. We were asked to come in again the next day to meet the cardiologist. The lovely young midwife who walked us to the door looked so deeply apologetic, I felt sorry for her. I said to Jon ’She must think we’re those neurotic parents who will worry about every single tiny thing, how sweet of her.’

The next morning we returned for a meeting with the cardiologist. We sat in the same room, holding hands, my belly and our baby covered in cold gel and the modern telephone, lying, waiting. After a while the cardiologist leaned back from her screen and asked if we would follow her into a nearby room so we could talk about what she had seen.

On our first scan, at ten weeks and two days of pregnancy, we had walked past a room with the door ajar. There had been a couple holding hands, sat on a sofa opposite a woman in a white coat. I remember thinking ‘Oh, that must be where they give people bad news’. We were taken to this room and I discovered that I was right.

The cardiologist sat with the midwife, who would be our main point of contact over the following weeks and explained what she had seen. Our baby had an interrupted aortic arch and a large hole in her heart that meant she would not survive outside the womb and would need open heart surgery at birth. This would entail an induced coma and being moved to a specialist hospital in Liverpool with a possible two month stint there to recover. This would mean no home birth, no breast feeding or bonding with our child as planned. The cardiologist sat and drew the sketches of the workings of the human heart and I felt tears spilling over my cheeks as the realisation flooded through my body.

We were given a moment to be together and hold each other. Jon had wrapped his arms around me like a lock, I remember worrying that he’d be uncomfortable holding me in his fitted suit jacket.

When the cardiologist returned she presented the next blow: the baby’s heart condition could be part of a larger problem. It could be Downs, Edwards’, Patau or DiGeorge and if so, this would require a decision. We needed to return the next morning for an amniocentesis. This test took intensely physically painful moments yet waiting for the results would take heart breaking weeks. There is no light relief.

We returned home in a cloak of dread and fear. I remember walking through the door, taking off my coat, avoiding seeing my swollen stomach and wanting to get mind-bendingly drunk and smoke ten million cigarettes. I was angry at this baby for being so deeply flawed. I was furious at it for kicking, for feeling so alive. Later that night I would I would lie in bed with legs placed perfectly so as not to touch my belly, to avoid any contact with the child I was falling away from.

Four days later, a desert of eternity, we received confirmation that the baby was clear of Edwards’, Patau and Downs. Now we needed to wait for DiGeorge. A simple two weeks.

Those two weeks passed and all I remember are the feelings of fury and an overwhelming sickness with the baby’s ever increasing kicks and rolls. I remember hearing a Kylie song on the radio and realising that no song would ever sound the same again. Every morning felt like the reverse of waking from a nightmare. Instead of waking up to relief that it was all over, I would wake up to horror, fear and my personal reminder that I needed to stop loving our baby, she may be leaving soon.

As Jon drove me to work one morning (I had given up walking into work in the mornings, there seemed no point) my phone rang and the midwife gave me the news that the baby had been diagnosed with DiGeorge syndrome. Jon saw my mouth open in a silent scream and pulled the car over. We sat and held each other as I pulled my seatbelt off and howled.

Immediately, we were appointed a genetics councillor and called in to discuss our options. We could either wait for the baby to be born, provide her with the open heart surgery and wait and see how her disabilities may or may not develop or we could terminate her life within the womb. 

We needed to make our decision quickly as the more chance a foetus has of surviving outside of the womb, the more legal and bureaucratic complications there are.

It was the only thing Jon and I had talked about since the scan and we had finally decided to end her life. This is an incredibly complicated issue which I will perhaps write about at another time but for now all I can say is that it is the decision we made and we still feel it was the right one for us and our child. 

I wish I knew how to explain the days, weeks of waiting in between tests, results and the final appointment. Waiting for death is something inexplicable and numbing, it felt like I went deaf and existed in a suspended tunnel, locked in dead air.

I love our daughter and think of her every single day, she is the backdrop to every single thought I ever have and every feeling I ever experience. 

On the day of the abortion, it was Monday 1st of December, I do not remember the weather. We arrived at the hospital and were ushered into a private room away from the nervously/happily expectant mothers in the waiting lounge. 

I lay down on the bed and pulled up my vest and pushed down my elasticated pregnancy jeans. The doctor covered my belly in more cold gel and passed the telephone over my belly. We weren’t shown the screen this time. The lovely midwife Della, who had been with us since the beginning prepared the needle and urged me to stay still. I did. I lay and watched the polystyrene tiles on the ceiling take on face shapes and I willed myself not to blink. Jon sat next to me and gripped my hand until we were both so numb that we had lost sense of where our bodies began or ended. 

After multiple attempts, Della managed to insert the needle and find the baby’s heart, stopping life with a tiny dose of poison. As the needle was inserted and our baby’s life ended, I saw a flash of turquoise blue lights rising up before my eyes. Part of her had left and now we needed to take care of her fragile body. Once they injection had been completed, we were left to cry in the dim lights and ache for our child and our expected future. I have often wondered how our midwife Della must feel with this weighty responsibility at such a pivotal moment in people’s lives.

Over the next 9 hours a pill was inserted inside my vagina to induce labour and I was offered pain killers, which I refused. An hour later I was begging for them and vomiting everything I had ever eaten up into what seemed like an endless stream of bowls. I have never felt such fear and all consuming pain in my entire life, my body was bursting and I didn’t know how to control it. Jon had stroked my hair, fed me, read me stories and collected my vomit but no longer knew how to heal my pain. 

The midwife decided to break my waters and finally I felt relief, moments after our daughter was born into the world, she slipped out of me, dead.

The midwife cut her umbilical cord and swiftly moved her away, possibly checking her for any physical deformities and to assert her gender. I was blurry on pain killers and trying so hard to stay awake, conscious that these were precious moments I needed to be present for and grab before she left us for good. 

The midwife brought us our daughter, confirming that she was a girl and wrapping her in a towel for us to cradle her in. She was a miniature newborn with slightly transparent skin and features that were yet to be defined as possibly ‘my nose’, or ‘Jon’s eyes’. She was a human at the moment before their unique physical design is decided. 

I hugged her with caution and watched her transparent skin, her tiny hands, her pure sleep and felt my head fall against the pillow with exhaustion. Jon took her from me and held her and murmured love to her. The little girl who had kicked and spun in side me and beneath Jon’s warm hands, was now with us.

I do not remember this moment but Jon has since told me that we agreed to name her Alma before they took her way.

Jon and I were offered a double bed in a separate room where we could sleep. The midwives routinely checked up on me, bringing me painkillers and plates of buttered white toast. The memory of this warm smell still brings me unexpected comfort, despite the circumstances. In the morning one of the midwives took me into the bathroom and helped extract the still present placenta. Two days later I found myself extracting the remaining bits of it as I stepped out of the shower at home.

The next morning we left the hospital and I stood outside the entrance in the sunlight, wrapped in an enormous woolly cardigan and blanket, waiting for Jon to drive round in the car and collect me. The sky and sun were in perfect unison for a sunny winter afternoon, the glass on the hospital walls was the perfect bright mirror for the December light. 

I stood on the pavement and knew that my life had changed forever. I love our daughter and think of her every single day, she is the backdrop to every single thought I ever have and every feeling I ever experience. 

She has changed me and made me more fragile and more robust, delighted yet cynical, in love and yet removed. Thank you Alma for your brief visit, we have many more adventures to have where we will take you to see the sea and the cliffs and the hills.