Two For Joy: The Agony Of Losing Twins

Two For Joy: The Agony Of Losing Twins

As I write this, I should be 27 weeks pregnant. Instead, it is three and a half weeks since I gave birth. The bleeding has stopped, and my breasts are no longer heavy with milk. But there is an ache in my heart and my arms. I have lost two babies. But I feel I have also lost so much more.

On 24 January, I was around 10 weeks pregnant, driving down the M32 to our first scan. I had booked an early private scan, to check the dates, as we were due to be on holiday for our 12-week scan and the replacement appointment I had been offered by the NHS pushed us into the thirteenth week. Knowing the nuchal translucency (NT) measurements had to be taken before 13 weeks and 6 days, I was keen to know if I would miss this window. I knew that at 35, there was a higher risk of certain chromosomal problems. I was also acutely aware of the fragility of those early weeks of pregnancy; so many friends had faced the pain of miscarriage before that first scan.

As we drove north from Bristol, I looked out of the window. Two fat black and white magpies hopped along the verge, and in my head I recalled the rhyme I always did when I saw these birds, ‘Two for joy’. It felt like a sign: that things would be all right; that we would see a healthy baby and a heart beating away.

When we arrived, we were shown straight into a small room with a giant screen on the wall in front of the bed. The sonographer welcomed me before quickly placing the transducer on my belly. It all happened so fast. I had prayed all would be OK and that we would have a healthy baby. Now, in front of me on the screen, I could see very clearly there were two. I immediately started crying. In one small moment, our lives had changed so much. The appointment was quick. After just a few minutes, we were walking out of the door with six black and white pictures of our babies. Our two babies.

As we returned to the car, my face ached from smiling. I look back to that day and I think I felt pure joy. It’s easier to believe that’s what I felt, although I think, really, I was terrified. I had already wondered how I would cope with one baby and the thought of two sent my mind into overdrive. But being a twin myself, it felt so obvious that this was how things had worked out. I know how special my bond is with my twin sister, so I was beyond delighted that my babies would have that too.

In February, we had our 12-week scan at Southmead Hospital, Bristol. It had been nearly three weeks since we found out we were having twins, and I just hoped and prayed they were both still there and OK. All seemed well. I was relieved to see two heartbeats again, I had my bloods taken and the sonographer took the measurements and reassured me she would tell me if she saw anything amiss. We then had to wait a week or so for the blood test results and the NT measurement to be analysed to give us the likelihood of any chromosomal problems. Again, I felt on tenterhooks, but tried to alleviate my fears by Googling and re-Googling our chances of the worst happening. On hopeful days, I felt relieved by the statistics I found; on other days, I found only facts that made me worry more. Finally, we got the results through, which put us at a low risk of any chromosomal problems. Now I felt we could relax into the pregnancy, so at nearly 14 weeks, I started to tell friends and family, everyone delighting in our news and doubly so when finding out it was twins.

Although I worried about how we would manage with two newborns, I knew deep down I was just so very excited and blessed to be having two babies at once, and that we would be becoming a ready-made family of four.

My husband, Phil, reminded me to enjoy the pregnancy, as we had discussed that this would probably be the only time I would be pregnant. As the weeks went by and the nausea finally eased, I joined a local pregnancy yoga group, signed up to NCT classes and booked into a special twins antenatal class. We talked about the things we would need to buy, and the logistics of where they would sleep. We decided at first they would sleep in a crib beside our bed, and to start with they would fit in one together. Thinking of the two of them together, asleep beside me, filled me with happiness and pride. I read books, blogs and anything I could about twins, taking away only positives from the experiences I read. I felt more and more initiated into this special twin parenting club. I knew it would be incredibly hard, but I felt so lucky.

On Tuesday 29 March, we had our 20-week scan. We were nervous and excited – cautious, as we knew this scan was primarily to check for anomalies, but, equally, we were hopeful to find out if we were having boys or girls or one of each. We had talked about names and decided on a few. I’d been feeling more and more movement since around 16 weeks, so I no longer had nerves about seeing if they were both still there with a heartbeat. When the sonographer started, she did a quick scan of both of them to see them wriggling around. She showed us their positions – both head down, all four feet high up under my ribs. Seeing all four of their tiny feet together is something I will never forget.

Then she started doing a thorough scan of twin one, explaining as she went what she was looking for, checking, measuring and clarifying that all was well. She asked if we wanted to know the sex of the babies. We said we did, and she told us twin one was a little boy. The tears came again, just as they had when we found out there were two, my heart swelling as we got closer to knowing what our family would look like. She passed us a box of tissues and then began to scan twin two.

As she scanned and took measurements, she was quieter. She seemed to be having more trouble finding the position she needed. She kept going for a few more minutes, before saying she needed to get her colleague as she couldn’t see if it was just twin two’s position or something to worry about. She left to fetch her and I looked at Phil, both of us silent as fear washed over us. Her colleague arrived and started scanning me herself. She went over and over, trying to get clearer images. And then she said there was something wrong. She showed me first a gap in twin two’s spine, then their small, misshapen head and other features, all consistent with spina bifida. The words were coming out of her mouth and I wished they would stop. I wished we could go back to half an hour before, to sitting in the waiting room, discussing what we were going to be doing at the weekend. I asked her if this was a mistake, if this could somehow be wrong and that maybe it would all be OK after all, clinging desperately to the thought. She said I would have another scan at the foetal medicine unit, but it looked fairly conclusive.

They both said they were sorry and that they’d give us some time on our own, and then they backed out of the room. We were alone. I looked at Phil. I didn’t know what this meant. Before I was even pregnant, we had discussed our feelings about what to do if there was something very wrong with a baby – that we would end the pregnancy. But I had not considered what would happen if there was something wrong with one of them and not the other. We were in shock, and we left wondering what on earth would happen next, and what this meant for twin one, our little boy who looked perfectly well. That’s when I realised that, amid the awful discovery, the sonographer had not let us know the sex of twin two. In that moment, I didn’t want to know. I told Phil I didn’t want us to find out. Perhaps if we didn’t find out we could pretend, in our minds, that all along there had only ever been one healthy baby, and we could protect ourselves from the horrific loss.

I was due to see the consultant after the scan anyway as part of the twins clinic. We were ushered into another room, small and hot. As we waited, I wept, and I looked at Phil who was also crying.

The consultant came in, along with a student, and asked if we knew what spina bifida was. I said I had heard of it and it was why I had been taking folic acid before conceiving and in the months after. I had taken the recommended dose. He explained it’s not always clear what causes it and the risk is only reduced by taking the supplement. He then explained how spina bifida was likely to affect our baby, and described how they would have little control of their bowel and bladder, and likely no lower-limb function. He went on to describe how failure of the neural tube to develop properly and close as it should, can lead the spinal fluid and nerves to protrude outside the body in the womb, and in turn can cause problems in the brain and with brain function. That was what had caused the shape of our baby’s head to look as it did. He said I would have a follow-up scan the next day to assess how severe it was and to give a more accurate outlook.

I asked what this meant for both our babies. He explained how things could proceed: we could choose to terminate twin two if we felt that was the right decision, but this would happen later on in the pregnancy, as with the procedure comes a high risk of going into preterm labour. If we chose to go ahead with it, it would be done at around 32 weeks, to give twin one the best chance.

This horrified me. My initial thoughts of trying to carry on as if this was a singleton pregnancy started to evaporate. In hindsight, I realise I was trying to protect myself from the terrible pain of knowing twin two was leaving us. I had wanted to pretend, to have my mind believe, they might never have existed, as that would have been easier and less painful. Waiting for another 12 weeks would make those thoughts impossible. We could not shield ourselves from the agony of the situation. They were already our much-loved and longed-for babies. Both of them. Our twins.

We left the antenatal clinic, sat in the car and cried.

When we got home, we cried some more and discussed what we would do. We both knew, for us, the decision would be to terminate twin two if the scan confirmed what the consultant had described. We discussed the impact on twin one of having a severely disabled sibling – and a twin at that – on the rest of their life, and how both their lives might look beyond us, once we had died. And we discussed what life would be like for twin two, having to live alongside their twin brother who had none of the struggles they had. I felt some small feeling of relief that Phil and I felt the same. That I was not doing this alone and our decisions aligned. This isn’t the decision everybody would make. 

At the follow-up scan the next day in the foetal medicine unit, the consultants and midwifes treated us with such care. They all knew what an awful situation we had found ourselves in, and that the decisions and choices ahead of us were some of the worst that parents can ever have to make. They worked quietly, and I asked them not to turn the screen on for me; seeing my babies together again so full of life felt too painful.

After half an hour or so, they had the measurements they needed and confirmed what we already knew. Then they asked if we knew the sex of both babies and I explained that we knew twin one was a boy, but we were yet to find out about twin two. They told us twin two was also a boy. My heart broke at the thought of my two boys. My twin boys, who would never grow up knowing that special twin relationship.

As they were both boys, there was a possibility they were identical, although unlikely. And if this was the case, and if the abnormalities were caused by a chromosomal problem, twin one might be affected in ways we couldn’t yet see. We decided we would have an amniocentesis, which would check their chromosomes and rule this out. There was a risk of miscarriage with the procedure, which was higher for us because they would have to use two needles, one for each twin, but by this point we needed to know, and my concept of statistics and the percentages of risks and chances was skewed. The numbers had been so cruel to us already, I felt they meant nothing anymore. I would return later that week for the procedure.

The days that followed the procedure are a blur. I rested, and my family rallied round. Friends who had been waiting to hear news of the 20-week scan were updated, and they sent flowers and lasagnes, offers of help and support. In that time, I began to grieve for our little boy, our twin two, who would not be coming home with us. My heart was utterly broken and every morning when I opened my eyes, tears would fall before I could even speak. I was so sad for him, the hand he had been dealt, but sadder still for his brother growing up without him. I was sad for us too; the life we had imagined with them both was now gone.

I allowed myself to start to hope for twin one – to hope I would be bringing him home. But amongst it all, the thought felt like some sad consolation prize. I was supposed to be a twin mummy. Our place in that special club as twin parents had been taken away, along with their precious bond, their lifetime of never being alone, and our ready-made family of four. It was all gone.

We had been told it could be two or three weeks before we had the full results of the amnio, and with the Easter bank holiday during that time, we prepared for a long wait. When the initial results came back a couple of days later showing that both of them were clear of the most common chromosomal disorders, trisomy 13 and 18, I felt another spark of hope. I was utterly devastated about what lay ahead for twin two, but I could be strong for twin one if I needed to be. I felt, in those days, that perhaps that was what it was to be a parent – to experience some of the most utterly heart-wrenching emotions, but to know I could be strong when I needed to be for my babies.

The hope grew each day, and I imagined how painfully sad it was going to be, to give birth to both my boys with only one of them coming home with me. I also thought about how grateful I would be for my surviving twin, how much I would love him, and I imagined holding him after birth, and then later having him in a sling snuggled close to me. How grateful I would feel, after everything. In the back of my mind was also my greatest fear that the results of the tests would reveal something wrong with him too and that I would have to end both of their lives and give birth to two dead babies. This was still a very real possibility, and I kept thinking how awful and sad it was that my first experience of birth might be this way.

Finally, a week and half after the amnio, I got the results. The chromosomes for both boys were all clear. But, surprisingly, it also showed they were identical. I felt relief for twin one, but suddenly the road ahead seemed so full of challenges. I was now over 22 weeks pregnant and my bump was growing fast. I was uncomfortable and some of my maternity clothes were already too small. I spoke to my mum about this, and she told me that when she’d been pregnant with me and my twin sister, she hadn’t enjoyed it at all compared to her other pregnancies. She sympathised with my growing discomfort. We talked about our upcoming holiday to Pembrokeshire and about getting out in the sea air and walking and trying to find light and hope in what was an unbearable situation, growing bigger and bigger with my two babies, knowing that one of them would not live. I felt so visibly pregnant at this point that I dreaded going out and people asking me when I was due, or worse, realising how big I was for that stage and asking if it was twins, not knowing how I would be able to respond.

Over Easter, we visited family, and it all felt so hard, knowing it should have been such a happy time, talking about our two boys and getting excited for their arrival. They would be the first boys in my family, coming from a family of all girls – I have three sisters and two nieces. They would be my parents’ first grandsons. I was so conflicted trying to grieve for twin two while planning for twin one’s arrival.

We got home to Bristol on Easter Monday, and I started writing a list of questions for our appointment with the consultant later that week. The next afternoon, I noticed some bloodstained discharge. I panicked and my heart sank. I immediately phoned the antenatal unit. The midwife said it sounded like it might be fine, but owing to everything else that had been going on for me, perhaps I should come in. Having been reassured, I didn’t feel there was a rush. I called Phil to say we needed to go in, and as he started the 45-minute cycle home, I made him a sandwich, knowing we would probably be waiting around at the hospital for a while.

When we got there, I had the usual checks – blood pressure, urine sample – and then I waited in a bay to be seen. At around 7pm, the doctor arrived and said they would scan me, as it can be tricky to find the heartbeats for twins using a doppler. She wheeled in the ultrasound scanner, and I saw my two boys wriggling around. She said all looked good on the scan, and someone would come back and do an internal exam with a speculum. After seeing my boys on the screen, I felt reassured, and I was not in any pain, so I reasoned with myself that perhaps I was just being an anxious first-time mum.

The doctor returned with her colleague and prepared me for the internal exam, but in the next few minutes, everything I had already been though with the pregnancy would pale into insignificance. While examining me, she said immediately in a panicked voice that I needed to be moved to delivery: my cervix was 1–2cm dilated with membranes bulging. My world fell apart in front of me. More and more people arrived in the curtained bay, and all I could say was, “It’s too soon.” They wheeled my bed through the assessment unit, up the corridors and into the central delivery suite. We entered a room in which I suddenly saw two cots, ready for my boys. It dawned on me they were coming now. My boys were leaving the safety of my womb and they would not survive.

I was helped into a hospital gown, and the room seemed to fill again with more and more midwifes. They hooked me up to various drugs that would help my tiny babies under-developed lungs and brains, in the hope they might live. They started me on magnesium immediately, and explained that it would feel unpleasant as my skin would burn and I would feel far too hot. They set up fans and placed a cold compress on my neck as Phil held my hand. A neonatal doctor arrived to counsel me about what would happen if my babies arrived now. I knew why she was there: to ask if I wanted them to keep my babies alive or not. 

It felt like such a cruel twist to our story. We had already come to terms with losing one of our twins, but I had imagined I still had time with them both. I had started to grieve, but I knew I would love them as much as I could for as long as I carried them both with me. And that thought now seemed all the more poignant. We had discussed and agonised about what would be the kindest thing to do for our babies, our children. What a good quality of life meant and looked like. And what authority did we have to make those choices? In the previous three weeks, we’d had to process all of this for twin two, who we had decided to name Archie Thomas. Archie meaning brave, and Thomas meaning twin.

 

But here we were now having to make an even harder choice. Archie was never coming home with us and his diagnosis was clear, which in some ways had made our decision for him more bearable. But now we had to choose if we thought our other twin would survive with a quality of life we found acceptable. If we chose to ask the doctors to keep our baby alive if he was born now at 23 weeks gestation, there was no way of knowing what lay ahead of him. There was no way of knowing if he would be among the very small number of babies born at this stage that not only survive, but survive with no impact to their health.

I was hooked up to another drip to stop contractions and delay labour as they continued to give me steroids to help my babies’ lungs in the event that the labour progressed and they were born. It all felt so impossible. I remember at one point saying to Phil that it felt as if we were in some sort of hell – that this must be what hell was like. Sitting in that room with the two cots in front of us. Looking out of the window and wishing none of this had happened. Being told that every day they stayed inside counted. Knowing the stakes were all so high. I felt like a ticking time bomb. Twins one’s chances were just so slim if he came now, and what would he have to go through to even have a chance of surviving? The thought of the interventions, the tubes, the drugs and potential operations filled me with horror.

That night, Phil slept in the chair beside my bed and I frantically tried to Google the likely outcome for babies born at 23 weeks. Again, I was fighting a tide of information that I could interpret one of two ways, and minute by minute I felt my brain swaying between wanting to find positive outcomes and knowing that they were few a far between. Statistic after statistic that I knew meant nothing. As I had discovered all the way through my pregnancy, you can always be among the one per cent worst case, so the information really meant nothing. 

In the end, I read something that struck a chord. In order to make the decision, someone suggested asking yourself what would be the worst outcome for you to live with: the death of your child, or their suffering?

For me and for Phil, the worst thing would be their suffering. Their death would be on us and we would have to live with that pain forever, but I could not put suffering on to my child and the risk of that, in that moment, was just too great. We decided that if the labour progressed, we wanted to provide care and comfort to our babies, but not to hook them up to ventilators and try against the odds to keep them alive. I would like to say I made the right decision for us, but the agony of this choice is that I will never ever know.

By Friday morning, things had settled and I was off the drugs. After all our heartbreaking decision-making, it was now just a waiting game. Hope returned. I would go to my original appointment in the foetal medicine unit next door and a new plan would be made with my consultant. At the appointment, I had another thorough scan. Both babies looked none the worse for the previous few days’ events. My consultant discussed the option of having a cervical stitch, which could help prolong the pregnancy and give twin one a better chance. He would need to examine me to see if this was a possibility. There were, of course, risks that went along with this. I was admitted to the antenatal ward and we agreed for now to do nothing. He would come back and see me on the Monday morning to discuss again the option of a stitch.

That afternoon, I left the labour ward where we’d been for previous three days and was taken down to a room on the antenatal ward. This felt like a positive step, away from imminent delivery and the reality of saying goodbye to both my babies. I allowed myself to hope a little more, amid the horrible fear of reassessing the decision we’d made: every day and week that passed, and hopefully it would, I would need to rethink what we had already decided.

That night was the first Phil was unable to stay, now that we had moved away from the emergency situation. I said goodbye to him and tried to settle into my bed to rest. I was alone with my boys and looked out of the window. Hopping along was a single magpie, ‘One for sorrow’.

I wondered why and how things had gone so wrong for us. I was not naive in thinking that getting pregnant and having a baby would be easy. I was careful not to let myself believe that things would be plain sailing. But I had never imagined things could end up like this.

By Saturday morning, I was 23+4 weeks pregnant. Things still felt settled, but my anxiety was growing about the decisions and choices we would now have to make regarding the stitch, and the reality that whatever we did, this pregnancy was hanging on by a thread. Phil returned to be with me at the hospital along with my twin sister for support, and we spent the morning trying to distract our minds by watching Friends. 

I started to feel some pains in my back, but I reasoned that I had been essentially lying in bed for nearly a week now, so no wonder my back was sore. As the morning progressed, the pains kept coming. By midday they were coming with some regularity, and I think I knew then, that this was really it. The midwives asked a doctor to come back and examine me again. By the time she arrived, I was having to move and sway to get through each contraction. Before she examined me, I asked that if she felt things were progressing and wanted to move me to delivery again, that this time I didn’t want it to be a panic, or a rush. I needed to feel I was no longer fighting it. I looked at my sister. I was worried that not having done the hypnobirthing course or the antenatal classes, I wouldn’t know what to do. But she said I could do it; that my body would just know.

When I got to the room on the delivery suite, I knew nothing they could do now was going to stop what was already happening. My babies were coming. They would be born too soon, and I was going to lose them both. I told my sister to go home. I needed it to be just Phil and me. Our family.

Having worked at JUNO for over 11 years, I have read and shared so many stories and experiences of birth – beautiful birth photography and accounts from mums, dads, doulas and midwives. With all that knowledge and information, I never imagined that my first experience of birth would be as it was that evening. The midwives that looked after me that day and night were amazing. They sat with me and held space for me to birth my boys, as my body knew how to: the last thing I could do for them as their mum. They dimmed the lights and lit small nightlights, and silently supported me to do what no one should ever have to. I will always be thankful for the care I received that evening, for the sensitivity that the midwives showed.

Kit William Kingston-Jones was born at 23:56 on the 23 April. He was checked over by the neonatal doctor, wrapped up and given to Phil to hold as I prepared to give birth to his brother. Fifteen minutes later, at 00:11 on the 24 April, Archie Thomas arrived. After I had delivered the placentas, I was given them both to hold. A moment I had imagined so often: my two perfect babies in my arms. I knew they would not be staying on this Earth for long. My midwife took photos of us all together, careful to capture the brief time we had, and knowing how important those photos would be for us.

The boys lived for just a few hours. They passed away in my husband’s arms, as I slept. I am forever grateful that their birth and their short lives were peaceful, with each other, and with us, and I hope without suffering.

After they had passed, the midwives wrapped them close together in a blanket and placed them in a cold cot so they could stay with us in the room for however long we wanted. I was so comforted by them being there with us. We rested and spent the next day with them, preparing ourselves to say goodbye. By 5pm on the Sunday, I felt ready to go, or at least I knew if I didn’t leave then, I wouldn’t ever feel ready to leave them behind.

Staff at the hospital had made handprints and footprints of them both, and put together a box with candles and their tiny hats. We walked out of the delivery suite with a memory box, instead of our babies. Walking away from the hospital was one of the most painful things I have ever had to do.

The weeks that followed have been some of hardest times of my life. The pain of losing my babies is unlike any grief I have experienced. The emptiness I have felt has at times been overwhelming, and I often wondered if I would survive. In the first couple of weeks after their birth we travelled down to Pembrokeshire for a holiday we had booked before our nightmare began. I should have been 25 weeks pregnant. Instead, I was recovering from birth without a baby in my arms. Phil and I sat on our favourite beach, the sun shining, and I wondered how it would be possible for us to ever feel joy again. 

On 30 May, we said our final goodbye to our boys. We had them cremated in a small service with just our families. Phil carried their tiny white coffin into the chapel. What an awful thing for a father to have to do, his first experience of fatherhood, but I knew he felt how I had when I had given birth: this was the last thing he could do for them. I could see how much sadness and pain our loved ones felt for the loss of their grandsons, their nephews. None of it felt real. How had it all gone so wrong?

I lost my two boys, but I have lost so much more. I have lost confidence in my body to do what it should have been able to. I have lost an innocence, to enjoy pregnancy and to believe that, if I get pregnant again, things will turn out OK. I have lost my identity: I was to become a mother, but I now don’t know where I fit in this world. I am not in the same place as my friends and family who have children, nor can I identify with those without.

Baby loss is complex and painful, and I know friends and family also find it hard to help and support us now. When someone dies too young it is always an agonising tragedy. But the way of finding light in the loss is to heal with memories and thoughts of a life well lived, no matter how short. When a baby dies, there is such an emptiness. You only have the hopes and dreams that were so painfully unable to be realised.

I am now nearly 12 weeks into this life without my boys. I will always be a different person to the one I was before. People have comforted me with the thoughts that not only am I emotionally changed, but my boys’ DNA will stay with me forever, having physically changed the molecules inside me.

My life will always be divided into the time before and the time after. It is only in the last week or so that I am now able to see that there is a time after. The waves of grief are still crashing over me, but as the weeks pass, it feels a little more manageable. The periods between each wave are lengthening, allowing me to catch my breath. With those breaths I can imagine that life does and will go on. I will survive this. I will live the life my boys were unable to, living it the best I can for them, as they were not lucky enough to have that chance. My perfect identical twin boys. I will be forever grateful to be their mum, for showing me a love I never knew existed. I will be reminded of them every time I see two of anything – two butterflies, two dragonflies, two magpies – as I often do, and I will always think, ‘Two for joy’.

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Rosalind Kingston-Jones is a graphic designer. She lives in Bristol with her husband, and has been designing JUNO for over 11 years. She is taking a break from JUNO following the birth of her twins.

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Rosalind has taken great comfort from reading about the experiences of people in similar circumstances to her and Phil. As part of Baby Loss Awareness Week, 9 to 15 October, Rosalind is sharing her story in the hope that it will be helpful to others. babyloss-awareness.org

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Illustration by Veronica Petrie
studiovink.co.uk

 

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