Losing our two bears – Gary’s story

Gary looks back on the tragedy of losing his twin girls within four weeks of each other in 2003

No parent should have to go through losing a child. Yet, I lost both of my twin daughters in October 2003, three and a half weeks apart. My loss may have taken place 17 years ago, but it took me 14 years to properly start grieving. I hope sharing some of my story here will help those who are going through or have been through a similar experience to express their grief instead of bottling it up.

In early 2003, Michelle, my wife of three years, walked towards me as I came through the door from work, holding a gold box I hadn’t seen before. Inside, a pregnancy test showed ‘positive’. We were so happy because, after trying for so long, we thought we wouldn’t be able to have children naturally. We had a scan just before Michelle was 12 weeks pregnant because she was having some pain. Two babies’ heartbeats appeared on screen - two babies! After all this time trying for one, we were given two. God was definitely shining down on us that day.

But as quickly as the joy arrived, came fear. The medics suspected that one twin might have Down’s Syndrome and they were investigating the possibility of Twin-to-Twin Transfusion Syndrome (TTTS). I’d heard of Down's Syndrome but had no clue what TTTS was. All I knew was that it wasn’t good.

We were referred to the Fetal Medicine Department at Birmingham Women’s Hospital where we found out that neither twin had Down’s Syndrome but it was confirmed they had TTTS. Our way of life changed completely from then on as Michelle had to have scans at least twice a week.

TTTS is a serious condition where the blood flows unevenly through the placenta so one twin gets too much and the other too little, which has major consequences for both: the first gets high blood pressure and the other becomes dehydrated. Today, the condition is more easily corrected with laser treatment but in 2003, Michelle had to have serial amniodrainages to keep the twins alive and to stop her from going into early labour. I could only look on, feeling helpless, not knowing what to do.

Each hospital visit came with news about their health – most of it not positive – and that was hard to keep hearing. But what were we to do? The love I felt for them was all-consuming and very real, even though I had only seen them on the monitor of the scanning equipment. I just held onto the hope that they’d turn a corner. I needed them to.

At a scan when Michelle was nearly 29 weeks pregnant, the atmosphere in the room was more charged than usual. We were told the twins needed to be born that very day. I went through every emotion - one emotion jumping on top of the next. To add to that shock, there were no neonatal cots available at Birmingham Women’s Hospital or any other hospital in the city. So, we were going to be transferred by ambulance to Royal Shrewsbury Hospital, 60 miles away. It was in the ambulance that we decided to name our little girls Alana and Dana.

Within minutes of our arrival, Michelle was rushed in for an emergency caesarean. I wasn’t allowed to be with her - I felt useless. The hope that they’d survive kept me going while I paced about. I was also probably in denial: I didn’t want to even contemplate that they wouldn’t survive, I didn’t want to have to face the pain that went with that.

Everything seemed to move even quicker then. Alana needed heart surgery and was transferred back to Birmingham Children’s Hospital. Dana was staying in Shrewsbury with Michelle while I stayed with Alana. Alana was so fragile and having to see her fighting for life will stay with me forever. After three days, Alana died, unable to be stabilised for the surgery that would have helped keep her alive. Michelle, although in no fit state either, travelled back to Birmingham and was able to hold Alana as she passed away.

My heart was completely broken. I didn’t want life to continue without Alana. But I kept my chin up and pretended that I was coping. Most of the attention was on Michelle and that suited me fine. But there was little time to grieve: we weren’t able to go home and contemplate what had happened and just be together, because we had to make the 60-mile journey back, that same evening, to Shrewsbury, to be with Dana, who was also very fragile. The rollercoaster of emotions was unreal.

I know that support was probably offered to me but I know if it was I would have turned it down, said that I was ok and hoped that no one would have noticed that I wasn’t. I didn’t want to share my deepest, darkest thoughts with anyone. I didn’t want to share them with myself. It was all too raw, too soon. Maybe I’d never be able to say them out loud or sort through them in my own head. I wanted that to be the case. The deeper I could bury them, the better.

Dana was improving very slowly and when she was almost a month old, we received the news that there was a neonatal cot available back near Birmingham. Michelle had continued to live in Shrewsbury all that time, with me going back and forth from home on a daily basis. So the thought of being able to go home was welcome news. But within hours, with Dana ready in the transporter incubator, her blood tests came back. They showed that there was infection somewhere in her body and she wasn’t well enough to travel. She fought until the end but died less than 24 hours later.

There are no words that can express how I felt then. Such grief, loss, guilt, despair, blame, anger – everything destructive settled within me. I didn’t want to have to face my emotions. I didn’t want to talk about the twins. It was way too hard. But Michelle did. How we survived as a couple, I’ll never know. I can totally understand why some couples don’t. People around us didn’t know what to say or do either. How could they?

It wasn’t until three years ago, in October 2017, when Michelle was diagnosed with breast cancer, that my grief hit home and surfaced. I looked at Alana and Dana’s memory boxes for the first time ever, made lovingly by Michelle soon after their deaths, and I broke down. I have never cried so hard and for so long in all my life. It had taken 14 years and other huge changes in our lives for me to allow my grief to escape.

Maybe it was those circumstances that made it come to the surface. Maybe I was just ready. Maybe I didn’t want to hold it in any longer. Maybe it was all of the above. But on that day, I realised that there was probably lots of men out there just like me, still holding onto their grief and not knowing when it might surface or dreading the day that it would. So, there and then, I decided that I was going to write a book about my journey through the most traumatic time of my life, titled ‘Daddy and The Two Bears’ to hopefully help other fathers. (‘The Bears’ was our nicknames for Alana and Dana throughout Michelle’s pregnancy).

If there are any dads who have lost babies reading this, please ask for help, speak to your partner if you can. I kept so much pain inside for 14 years - not only did it have a cost on my physical health but massively on my mental health. I’m now a counsellor myself, helping and supporting others – I’ve come a long way from the person I was in 2003. Sure, we all deal with grief differently, but speak out to someone because not dealing with your grief is worse still.