Welcome back to my series Life After the Loss of a Twin. I have had some really great feedback about raising awareness with these posts so I am glad I am not just sharing my story but others too. Losing a twin is such a bittersweet experience and brings on such a range of emotions. As always, with baby loss there is no right or wrong way to navigate the grief but I was interested to hear how other twin loss parents coped with it. Today we are hearing from Rhiannon from the Instagram account Twin Mum Minus One.
Tell me about you and your family.
I’m Rhiannon I’m 35 & have been married for 10 years to Gareth. We live in Pontypridd in South Wales.
How did you feel when you found out you were having twins?
We had 3 lovely children Olivia (13), Harrison (10) and Tait (7) when we found out we were expecting twins in December 2016. We were knocked off our feet to be told we were expecting twins! It was stressful but exciting too. 5 kids was going to be AMAZING!! I felt overwhelmed, special and very lucky.
Sharing as much or as little as you like tell me about your twins story.
As a nurse I knew identical twins were high risk but didn’t know exactly why this was. Therefore when they told me they shared a placenta I immediately worried but over the coming weeks I put it to the back of my mind and tried to work out how we were going to do it all.
At 16+5 weeks we attended a routine scan which showed a fluid discrepancy, I think from that day on in my gut I knew we would not take both our babies home. It was bitter sweet as we also found out they were girls, I was in my element after just having 2 boys!
My life changed forever from the 16th January 2017. We were referred to Bristol for an opinion from fetal medicine who were experts in Twin to Twin Transfusion Syndrome (TTTS), a condition found in a shared placenta where blood vessels were unevenly distributed. This caused one baby to have too much blood and one baby to have too little. We travelled back and forth to Bristol for just over 3 weeks until we qualified for laser ablation surgery. This involved inserting a camera and laser into my uterus and lasering the connecting vessels to even out the blood flow. I was awake throughout. We were given poor odds. Without surgery there was a 10% chance of a surviving baby; Twin One had a 40% chance of surviving and Twin Two had a 85% chance as long as we had surgery.
The following 24 hours after the procedure would be critical, if our girls made it 7 days post laser they would have a high chance of making it to a viable gestation. We left that evening with 2 hearts beating, I felt that we might just do it!
Everything went well in the following 7 days and our girls were recovering. Both had good movement, the size gap was less and Twin One had her fluid back. I was on top of the world, so much so that the following Friday I even ventured to Mothercare to look at baby things when we were on our way back from Bristol. I was 21 weeks pregnant and we hadn’t made any preparations! I’ll never forget that weekend; I Googled twin things, thought about outfits & prams and whether they would they share a cot or not. There was so much to prepare.
The following Tuesday 11 days post laser I experienced back pain and felt generally unwell so I attended the local hospital for reassurance. That day we found out Twin One had gone, her tiny little body was still on the screen. My perfect girl.
Twin Two was alive, but the Doctors could not say if she was well. I was told that if labour followed, which was highly likely they wouldn’t intervene. My perfect fighting girl would be allowed to die. Scared and alone doesn’t even begin to describe how I felt that day. I was too scared to move in case my babies fell out. I learnt that your face could burn from tears and that nothing could make it better. I was petrified I would let my surviving baby down, then I suddenly realised I would have to let my dead baby go too.
In the first days following her death I hated having to carry her and the thought of people wondering where her body was. I hated being that mum who had lost a twin. Quickly I learnt to cherish every second, she was warm and close inside. I could talk to her and hold her. She had her sister with her. They were together. I didn’t have to say goodbye yet.
How did you cope with the bittersweet emotions of losing a twin and having a surviving twin?
I didn’t cope too well to start with. I hated that this had become my life. I constantly asked why us. .I felt angry and like no one actually cared we had lost our baby because we still had one baby. I felt I accommodated the awkwardness of the subject by not talking about her It made me feel so isolated! Guilt would wash over me when I didn’t acknowledge her but the feeling of awkwardness when I said I was having twins buts one had died was painful. I couldn’t find the right balance for others, I didn’t even think about me.
Was our survivor going to live unsettled because her perfect double wasn’t here with her? Was she going to be lonely. Would I lose her too? I had so much to say but I just couldn’t get any of it out.
Our girls were born at 35 weeks; Isla spent 8 days in special care and Isabelle came silently and was taken quickly to the funeral home. I didn’t see her. I couldn’t do it. I was paralysed with fear. I loved her every second her heart beat and I held her close everyday but I had said my goodbyes and needed to concentrate on Isla who was poorly. I will eternally feel guilty for that.
How do you remember your star in the sky?
I remember Isabelle with my whole being, everything in my life resolves around our special girl. We don’t have any rituals, we just talk about her all the time. I light my candle if I need too and I love to buy things with her name on. Me and the kids have a song in the car, when it comes on we remember Isabelle. We say her name. I think it’s so important that I normalise her death and our loss, it happened. They ask questions I’m okay with that too. I’ve cried with them here I’ve talked openly about what happened, I want them to know it’s okay to not be okay.
Did you get the support you needed from those around you when you were going through this time?
Having to carry your dead baby for 14 weeks after they pass is traumatic. I longed to grieve but couldn’t access the support as it instilled fear in me that I might lose Isla too. The risks of her being still born or having brain damage was high. By the time I was brave enough to fall asleep at night I was emotionally and physically drained, I didn’t connect with Isla in fear that the placenta would fail her too. I hated my body for letting her down.
How is your life now after loss?
Rightly or wrongly I feel that losing a twin like I did stops you from losing hope as you have so much to live for. However, continuing my pregnancy with Isla meant I didn’t get to meet Isabelle. I didn’t get to to hold her or kiss her . Physically she deteriorated in the time I carried her. That scared me. I didn’t have the space to figure out how I felt or grieve. My resilience was at empty.
I grieve my normal pregnancy. I look at my survivor with complete awe, she is truly a miracle. My heart aches as I want my girls together; Isla has been denied her closest friend, her other half. Nothing will make that okay but I have to I still the confidence in her that she is her own person, it just means she has an extra special angel on her side to guide her through life.
A massive thank you to Rhiannon for sharing such a personal story so honestly and for telling us all about her girls. If you want to follow her journey more than head over to Twin Mum Minus One on Instagram.
You can read other life after losing a twin stories below: