Lauren and Michael’s Story

My partner, Michael, and I decided we wanted to try for a baby in 2021. We knew the statistics and we were wary, but, naively, assumed we’d fall pregnant quite easily – we are both in our early 30s, (late 20s at the time) relatively healthy and have no known medical issues so surely it was bound to happen, or so we thought. I thought it would take a few months at the most but what followed was a year of intense tracking, month after month of negative tests, tears, disappointment, fear.

It got to the year mark and we decided we would go to the GP for advice (we knew that they probably wouldn’t offer much until it had been 18 months) but luckily, they offered to run some tests on us both before referring us to a fertility clinic. A few days before receiving our test results (which all came back ‘normal’), by some miracle, I found out I was pregnant; my heart dropped when I saw those two lines appear and the word ‘Pregnant’ appear on the digital. We were going to get our baby and be a family. But, we weren’t. Because a week later, I sadly miscarried. We were now another statistic – 1 in 4.  

After a short period of grieving, we were ready to start trying again. We were back to fearing the worst but, luckily, almost as if my body knew what a pregnancy now was, I fell pregnant again 2 months later. I had already passed the point I miscarried at last time when I found out so it offered a bit of reassurance that things would be different this time. We decided to tell close friends and family our news and, like us, they were all over-joyed, supportive and excited for the future. Despite our happiness and people telling us that this time would be different, the overwhelming anxiety with this pregnancy was something I can’t put into words and I think only the people who have experienced a pregnancy after a loss will fully understand. Fearing the worst every day, dreading going to the toilet in case you see blood, over-thinking every twinge, symptom-spotting constantly and the ‘what ifs’ that take hold. To put our minds at rest, we booked a few private scans and everything looked well. This was it. Our little rainbow baby was finally on the way. Except, it wasn’t. 

Fast forward to our 12-week screening and scan in February 2023. We sat anxiously in the waiting room, watching other couples smile at their scan pictures and cradling their bumps. I was excited to finally see our baby properly but I couldn’t shift the feeling that something wasn’t right, but I put it down to my prior loss. I had opted for the screening tests for Down, Edwards’/Patau’s syndrome and it was explained to me as I lay there that if I was considered low risk, I’d receive a letter in a couple of weeks. If I came back high risk, I’d receive a phone call within two days. The sonographer started to scan me and Michael held my hand – he could see the screen and I couldn’t. I remember saying to him before we went in, ‘Look for a heartbeat’ as I again, naively, assumed that that’s all that would go wrong this point.

The sonographer was really quiet but told us our due date was August 2023. Michael was smiling and nodding at me – reassurance that everything looked ok. I whispered, ‘Is everything ok. Is it moving?’ and he laughed and nodded. So, I finally relaxed. But the sonographer was still very quiet and I noticed she was pressing extremely hard on my stomach. I think at that point, I knew something was wrong. ‘I’m sorry. I’m just going to go and get a consultant. I’ve seen something I’m quite concerned about but need a second opinion.’ I froze in shock and looked at Michael. He put his head down and squeezed my hand as I began to cry. What’s happening? This can’t be happening again. She’s made a mistake. It was meant to be different this time. 

The sonographer returned with a consultant who took one look at the screen and nodded in confirmation. She turned to me and said that the baby had a 6mm nuchal translucency (fluid behind the neck) and this was really concerning as the cut-off is around 3mm for a baby of this gestational age. I don’t really remember what followed as I zoned out, darkness blanketing me, but I remember hearing words such as ‘syndromes, heart/organ defects, and then the dreaded termination.’ I remember hearing a noise which brought my attention back to reality and thinking what’s that? Then I realised that the noise was actually coming from me: it was me crying.  

We were guided to a ‘quiet room’ – The Snowdrop Room it was called, where a midwife explained our next steps: we could continue the pregnancy but miscarriage could be imminent, terminate the pregnancy now, or we could opt to have a CVS procedure (which in itself carries a miscarriage risk due to it being an invasive test) to confirm a diagnosis before making any decisions. The midwife explained that if nothing showed from the CVS, which does sometimes happen, then it could be organ deformities and we wouldn’t know what exactly we were facing until we were at least 20 weeks. She did say that sometimes, in rare circumstances, the fluid may resolve and we’d continue to have a healthy pregnancy.

It was a whirlwind of information to process but we were told to take the time we needed to make a decision. How we decided I’ll never know. How can you make such an important decision there and then and know it’s for the best? In the end, we decided to opt for a CVS (the hospital I was under did not offer a NIPT) as we needed to confirm if there was a definite chromosome abnormality before making any further decisions. The next available appointment for a CVS was a week away and I remember thinking how on earth are we going to survive the next week? How am I going to tell friends and family that this is happening? It was so hard: we cried, we didn’t eat properly or sleep, we researched the internet endlessly like FBIs in hope of finding positive stories – which were very few and far between – yet the ones we did find gave us hope: they helped carry us through until that appointment.  

My screening results came back in the meantime and, as expected, I was considered high risk (1 in 59) for Edwards’ and Patau’s. We therefore assumed that our baby had one of these syndromes. During that week of waiting for the CVS, we decided to pay privately for a NIPT as we felt that this would give us more hope for the CVS if the results from this came back negative. Unfortunately, the results took a bit longer than usual (just our luck!) and we didn’t receive them in time for our CVS. But at least it gave us another chance to see our little baby and get one last scan picture. 

The consultant from the Fetal Medicine Team who carried out our CVS was amazing. He was experienced, compassionate and explained things more clearly to us. The procedure itself was very, very uncomfortable. Luckily, my placenta was in a good place so the risk of touching the baby and therefore miscarriage, was low. Now we just had to wait two days for results. On the way home, we finally received our results from the NIPT. We cried with happiness when we were ‘congratulated’ that we were low risk for all three syndromes! I remember thinking, the hospital must have got it wrong, maybe it’s not as bad as we thought.We were also told that we were having a girl. We were so happy and that glimmer of hope started to grow.

But our hope was shattered for the final time two days later. ‘I’m really sorry but the CVS has shown an abnormality. There is only one X chromosome present and this means the baby has Turner syndrome. Can you come in to speak with a consultant?’ Looking back, I think I knew deep down the outcome but I didn’t want to believe it. After the call, we rushed to the hospital and again were led to The Snowdrop Room where a consultant and a bereavement midwife explained the grim reality of Turner syndrome, something we hadn’t even heard of. Obviously, we wouldn’t know the severity of Turner’s our girl had until she was born so it was a huge risk to consider. However, we were told the likelihood of her leading a normal life was very unlikely. The consultant then listed a variety of the complications that she would experience. No parent should have to make the decision of whether they should end their pregnancy. But we knew that it was too much of a risk for us to take and would not be fair for her to have that quality of life. So, with heavy hearts, we decided to terminate our pregnancy.  

Again, naively, I don’t think I realised what would need to happen. I definitely didn’t think I’d have to be induced and endure labour and delivery and I definitely didn’t think we’d need to discuss ‘funeral’ arrangements. I remember stopping the consultant mid-sentence as she explained what would happen and I said, ‘Wait, why do I need to be booked into the delivery suite?’ She looked at me comfortingly and explained that because I was past 12 weeks gestation, I would have to deliver the baby naturally. At this point I felt physically sick. What had we done? Had we made the right decision? That same day, I was taken to the delivery suite and the process was started. 

We were in hospital for 3 days in total. The midwives were extremely kind and made the whole process as easy as possible – they went above and beyond and for that I am forever grateful. It was more painful, physically and emotionally, than I imagined it would be – seeing and hearing new-borns with their mothers, seeing pregnant women waddling around and holding their bumps, the medication, the examinations, and finally the contractions. I remember the midwife holding my hand and saying, ‘Darling, you’re in labour it’s going to hurt but you’re doing really well.’ I was in actual labour for 12 hours and was given as much pain relief as I needed. It was emotionally draining and I was exhausted. How cruel to have go through this and not have anything to show for it at the end?  

The birth itself was quite traumatic with a few complications that I don’t wish to discuss as I still have flashbacks, but our beautiful baby girl, Aurora, was born sleeping on 18th February 2023 at 14 and a half weeks old and she was perfect. We held her for hours, we cried, we told her we were sorry and that we loved her and then we kissed her goodbye. The support and care we received from the hospital was nothing short of outstanding and we are eternally grateful for that. The hospital even organised a communal funeral for us and it was a beautiful send-off and the closure we needed. Her ashes are scattered in a baby garden in a local cemetery and we visit regularly. And even though we’ve been told that Turner syndrome isn’t hereditary, we still remain anxious for next time.

The days and weeks that followed our TFMR were extremely dark and painful. The grief was, and still is, unbearable at times but we have amazing family and friends that have supported us. If you’re reading this, I am so sorry that you find yourself in this club. Yes, you will be angry. You will cry at pregnancy announcements and be triggered by friends’ and families’ babies and then feel like a horrible person for feeling that way. You will sob into your pillow at night and cradle your belly where there should be a bump. The grief will come in waves and hit you at the most unexpected times. But I am here to tell you that it does get easier – you will always, always remember and grieve the future that has been painfully ripped from you, but slowly the days become clearer and you start to feel hopeful again.

I wanted to share my story in hope that it gives at least one-person comfort or can raise awareness to others. TMFR is barely ever acknowledged but it is socommon! The baby-loss community is so supportive and I am thankful to ARC for their support and helping us recognise that our feelings are normal and valid. Aurora made us a mother and a father: we are parents. And she lives on in us. She’s every rainbow, every feather, every robin and every star. She’s made us who we are today.

So, if you’re reading this, I see you and I am sending you so, so much love and light.