Sophie’s story
This was never a position I ever expected to find myself in. 38, single, with the sudden realisation that meeting the right man and having a family might not ‘just happen’ for me. So, after a lot of thought and a ton of research, I launched myself into the world of solo IVF.
At first, everything went exactly to plan. I responded well to the medication, the cycle went smoothly, and one Friday morning I got the all-important call from an excited embryologist telling me that five embryos had made it to the blastocyst stage. My first transfer was scheduled and 10 days later I was standing in my bathroom at 5 am staring at a positive pregnancy test. I couldn’t believe it! How have I got this lucky?! This was the question that was spinning round and round in my head for three whole weeks until my 7-week scan brought me crashing back down to a harsh reality. “I’m sorry, there’s no heartbeat.” I’d had a missed miscarriage. I was devastated. Seven months of complications followed, beginning with an ectopic scare and ending with a D&C and two hysteroscopies to remove scarring.
When it was time to try again, I couldn’t believe my luck when I saw my second positive pregnancy test. This must be it, I naively told myself. I’ve had my miscarriage. I’ve done my time. Now this must be it. I pushed through the crippling scanxiety and felt a mixture of relief and joy wash over me when I saw my baby’s flickering heartbeat at the 7-week scan. I sailed through another scan at nine weeks and felt that enormous rush of love as I watched her grow. She was measuring a little small, but I was reassured it was nothing to be concerned about, and I began to let myself believe that this was really it. It was happening. I tried not to get carried away, but it was impossible. I knew immediately that she was a girl, that her name was Rose, and I would sing her song “Here Comes the Sun” to her every day.
At my 12-week scan, I felt that same rush of relief when I saw her dancing on the screen in front of me again. “Congratulations mama”, the sonographer smiled before continuing with the scan. As the minutes ticked by, my eyes darted between the screen and the sonographer’s face as I tried to work out how the scan was going. The silence was deafening. And then the sonographer took a deep breath and said a sentence that will be ingrained in my memory forever – “There’s something at the back of the baby’s brain I’m not happy with, I’m going to get my colleague for a second opinion.” I remember feeling a strange mix of complete confusion and terrifying certainty that this was the end. I just knew deep down that whatever this was, it wasn’t going to end well. The second sonographer explained the anomaly was a marker for spina bifida, or potentially a genetic disorder, but because the baby’s brain was still so small it could still develop normally, so I’d have to wait another few weeks to know for sure.
The next two weeks went by in a blur but felt like an eternity as I tried to process what was happening. Somewhere in the middle of that, it was mine and my dad’s birthday, and we were in a cafe having breakfast when I got a call from a midwife at the Fetal Medicine Unit. The routine blood tests I’d had at the 12-week scan had come back as high risk for Edwards’ or Patau’s syndrome. She set out my options for more testing, but I couldn’t focus, understand or retain anything she was telling me. It was like my brain had just shut down and was refusing the information. So, I went back to the hospital to see the midwife in person and was shown to the tiny counselling room on the side of the ward with squeaky plastic sofas and a sad box of tissues on the table in front of me. The room that no expectant mother ever wants to find themselves in.
The midwife gently explained that the scan combined with the blood tests meant it was highly likely my baby had a genetic abnormality and that a CVS, where they test a sample of the placenta, was recommended as it would give a definitive result either way. A few days later, the midwife called to confirm my worst fears – my baby had Edwards’ syndrome. She explained the condition was incompatible with life and I was facing a late miscarriage, stillbirth or neonatal death. That marked the beginning of a string of heart-breaking decisions that no mother should ever have to make – the first being how and when my baby would die. I walked out of the hospital clutching an ARC leaflet, trying desperately to avoid making eye contact with the excited couples I passed in the corridor smiling at their scan photos.
I called the ARC helpline several times over the next few weeks and by pure coincidence, Jane answered each of my calls. I spent the first few minutes unable to utter a single word, sobbing in complete disbelief at the conversation I was about to have. I honestly don’t know what I would have done without Jane in those weeks. I remember the calmness and understanding in her voice, which felt so comforting and safe amongst my internal chaos. I knew immediately what I had to do. I was terrified of continuing with a pregnancy that would inevitably lead to more complications, more pain, and the death of my baby in a way no one could predict. And I was terrified of Rose suffering through any of that. If Rose was going to die, TFMR at least meant I could be sure that she wouldn’t feel any of it.
The thoughts and feelings that come with TFMR are incredibly complex and impossible to explain. The English language just doesn’t have the words. My rational, logical brain knew 100% that I was making the right decision for my baby and myself – and I have never doubted that – but even when presented with all the evidence that this was medically necessary, on a very innate, primal level every fibre of my being still wanted to protect Rose. Because nothing takes away a mother’s natural instinct to protect her baby at all costs. That inner conflict is a devastating feeling and one which took my breath away as I was presented with the consent form. “Is there any chance you’ve got this wrong?”, I looked at the midwife, desperately searching for a glimmer of hope in her eyes. There was none.
The next few days as I waited for the TFMR were the most surreal of my life. Nothing felt safe. Everything felt dark. And it felt like I was existing in a parallel universe, watching the world carrying on around me but not feeling part of it. Nothing made sense to me anymore. I watched strangers walk past me in the street, going about their daily lives, and I didn’t understand why they couldn’t see or feel my pain. How are they OK when my world has just been turned upside down?
On 26 January, after a 10-hour labour, I gave birth to Rose in the bereavement suite on the maternity ward. I had two wonderful midwives who were by my side throughout and a bereavement midwife who supported me afterwards – physically, emotionally and practically with the many more decisions that came after Rose’s birth.
The months since then have been a rollercoaster and I still find myself winging it each day. Of course, I would have done anything to take away Rose’s Edwards’ syndrome and give her the happy, healthy life she deserved, but at the same time my heart bursts with pride and love every time I think of her, because to me she is perfect. She made me a mother. Not in a way I ever expected, but a mother, nonetheless. And that alone gives me the drive I need to keep her light shining in the world.
Losing a baby through TFMR is a devastating, misunderstood, and very lonely experience, especially when you’re in it on your own without a partner. After all the research I’d done, I could not have been more prepared to have a baby on my own, but I hadn’t considered for a second what it would be like to lose a baby on my own. It pulled me into a dark world I never knew existed. But in that dark world exists the most incredibly brave and fiercely supportive community of women I have ever met – many brought together through ARC. Listening to the stories of other women and hearing the reassuring words that only a TFMR mama knows how to say has been an absolute lifeline for me – and one which is even more vital as a solo mum.