'I was carrying both life and death and that was very hard' - Mum who sadly lost one of her precious twins at 32 weeks
When Niamh Connolly-Coyne was told that one of her twins may not survive after birth, her world was turned upside down. She tells her story, in the hope of helping others on their grief journey
To be pregnant with twins was so wonderful and very special. Alice, our four-year-old daughter, was thrilled about the arrival of her "two babies". We excitedly had our 'big' scan on January 5, 2015. It was however the day that our world turned upside down.
We were told the news that we didn't want to hear - Mia, one of our twin girls, had hypoplastic left heart syndrome and possibly trisomy 18. This meant that the left-hand side of her heart had not grown and therefore without significant heart surgery she would die soon after delivery. We left the hospital in utter shock and disbelief that this could be happening to us.
From then on, our lives were driven by scans. We hung onto glimmers of hope that Mia might have the heart surgery that she needed, but we knew in our hearts that she probably would not live. Over time, the fear of not knowing the outcome for our baby became overwhelming. We had sleepless night after sleepless night. Would she die in utero, would she live a few hours or a few months? How many operations would she need? Would we be able to bring her home? It was emotionally very hard, but we had to keep strong, we had to look after Alice, and both Mia and Emma were still growing.
We wanted to make memories of our two babies while they were both alive. Our foetal medicine specialist, Caoimhe Lynch, in the Coombe hospital, kindly took scan pictures of both babies whenever we were having an ultrasound. We took pictures of my huge twin bump as it got bigger and bigger.
At the same time, I also began to prepare for Mia's funeral. I picked out a beautiful dress for Alice to wear, and bought two identical teddy bears (one for each of the twins) and a beautiful preemie outfit for Mia. I left them in our spare room, so that they were there if we needed them.
At 32 weeks pregnant, I was having a trace on the twins' hearts - I knew by the look on the young doctor's face that there was no heartbeat. We were absolutely devastated - Mia had passed away. We were advised to "go longer" with the pregnancy, so that Emma could grow and develop further. So, we were not able to meet our babies for what turned out to be another four weeks. Knowing that I was carrying both life and death was very hard, but I did it for Emma. I also got great comfort from the fact that I was still minding Mia. I knew that once she was delivered, she would have to leave me.
Mia's passing made me so much more aware of the fragility of life, and I therefore started to worry about Emma's well-being. Our focus now turned to keeping Emma safe and to grow her for as long as possible while still carrying little Mia. Emma had taken a back seat in all of this, all of our previous conversations with consultants had primarily been about Mia, but now it was Emma's turn. I remained in hospital and was offered an extra level of care during the rest of my pregnancy.
Coping with life and death together
After the twins were delivered, a volunteer professional photographer from the charity Now I Lay Me Down to Sleep (NILMDTS) came into my tiny hospital room in the Coombe and took photographs of the babies together, both my husband and I holding the babies, and a photograph of all five of us together. These are photographs we might not have taken ourselves, so we are truly grateful.
We wanted to spend as much time as we could with Mia, so she stayed in a "cuddle" cot beside my bed and Emma's cot. Alice came into the hospital to meet her new baby sisters and was so delighted with them.
I really struggled to find a balance between caring for Emma while at the same time spending precious time with Mia. When I got home from hospital, I found myself thinking about Mia almost constantly but functioning as best I could for Emma. I felt robbed of the happiness parents should feel when they have a new baby. We had the sleepless nights that you have with a newborn baby, but we also the added sleepless nights from the overwhelming grief of losing a baby. I would not like to be back to those early days of constant, crushing grief again.
Leaving the hospital
Six days after my c-section, we brought Emma home. I sobbed in the car because we were leaving Mia behind and we were not bringing her home too. I went home with just Emma so that I could settle her in, but most of our day was spent organising Mia's funeral, which was going to the be held the next day. Faron, my husband, called the florist to arrange flower arrangements. NILMDTS emailed us two photographs. We printed them off and framed them, so that they could be placed beside Mia's little white coffin. This was such a different day than the day I brought Alice home some three years earlier.
The twins' birthday
April 16 is the twins' birthday. Celebrating one child's birthday and grieving for the other at the same time is very challenging. It's really hard to have a party for one when it should have been for two.
For the last two years, as the twins' birthday approaches, we wonder about how we will cope. We want to give Emma the birthday party that she deserves. We want the cake, the balloons and the photographs. But Mia's short but influential life deserves to be acknowledged and remembered as well. I put things in place so that Mia is remembered, we release some balloons and make a cake with icing butterflies on it to represent her. We also buy presents for both girls. Emma gets toys, but Mia gets different types of presents like flowers for her grave. I don't visit Mia's grave on her birthday - it's too hard to go into party mode for Emma a few hours later. We instead hold a separate remembrance day for Mia. I don't know if I will ever truly find a balance.
Two years on
We feel sad that strangers who see Emma do not know that she is a twinless twin. We have lost our "special status" in society as being the parent of twins. We also feel grief for Emma's loss of her future relationship with her twin sister. We feel sad for Alice (now aged six years) too, as she begins to understand what really happened.
We find ourselves wondering what it would have been like caring for both of our twins had they both survived - bathing, feeding, and changing two babies. We will never know, although we do have some insight as we parent Emma in our arms and Mia in heaven.
When we found out that we were having twins, we joined the Irish Multiple Births Association. We were going to be part of a special club where we would find information about caring for two babies. But now that one of our twins has died, we feel saddened that we are instead part of a different club - a club of parents who have lost a baby.
Emma and Mia were not identical, but all we have to do is look at Emma to conjure up an idea about what Mia might be like if she had lived. We wonder would she have curly locks like Emma? Would she be as outgoing as her twin sister?
We also find ourselves wishing that both of our twins were alive when we see living twins or there is talk about twins. We meet living twins in so many places that we go. Of course, when I see a double buggy I always feel the need to look and see if they are twins and if they are, I feel that sting of grief - wishing that both of our twins were here too.
At 10 months old, Emma started crèche, she'll start school in a few years' time. Mia would have been great company for her. They would have walked into their classroom holding hands. Then Emma's holy communion, her confirmation, secondary school, boyfriends, college. Her twin sister will be missing from all of these events and photographs. It is going to be hard, but we will remember Mia at all of these milestones.
Telling our girls about Mia
As Emma gets older, she will want to know about her twin sister. I will talk to her about what has happened from an early age, so that she will feel able to talk naturally about her twin and feel free to ask questions. We do the same with Alice right now. We also display memories of Mia around our home, so that Emma can feel that her twin is still part of the family. I have bought books about twins, so in the future I can tell Emma that she is also a twin.
I love to talk about Mia. I am proud to be a twin mammy. I sometimes hear Alice telling a friend who Mia is when they see our photographs dotted around our home. When we see feathers, rainbows, stars and butterflies, we think of Mia. We miss her so much. In her honour, I will continue to volunteer my time and make positive change for other parents who have a lost a twin.
How others can help
Most people do not know how to react to baby loss generally, but it's even harder to know what to say and do when there is baby loss in a twin pregnancy. I certainly wouldn't have known. However, the way in which others react and support bereaved parents will impact greatly on their journey of grief.
The best advice I can give to others is talk about and remember the twin that has died. Acknowledge the parents' loss for their baby and recognise that they are still the parent of twins. Feileacain (www.feileacain.ie) and A Little Lifetime (www.isands.ie) are two wonderful organisations which have helped me from the moment that Emma and Mia arrived. I would recommend that other parents who have lost a baby in a twin pregnancy get in touch with these organisations to get the support that they need.
Health & Living