Loss of our twin girls Sophie and Nina from IUGR after a TFMR of one twin at 19 weeks gestation

Loss of our twin girls Sophie and Nina from IUGR after a TFMR at 19 weeks gestation 

It’s hard to know where to begin documenting the experience of the loss of our twin girls Sophie and Nina from IUGR after a TFMR at 19 weeks gestation but this is my story from the perspective of a husband and father.

I can only describe it as the cliched rollercoaster of emotions. I was just coming to terms with the shock of hearing we were having twins and beginning to get excited and envisaging how life would be with 2 more children to join our 4 year old and 2 year old when we received life-changing news. We were beginning to plan the practicalities every twin parent does I’m sure- “we’ll need a bigger car, what will the sleeping arrangements be? How will nursery drop offs work?!”

I’ll never forget the moment I was on a work call with my boss when suddenly I remembered Gill was still at an additional reassurance scan to check the twins. It was supposed to be straightforward and we had initially been informed she had a dichorionic pregnancy which would be relatively low risk so I didn’t attend this one. 

I thought it strange that she hadn’t messaged to say all is still fine when I got that text – “can you call me ASAP please?”

I replied “yes, is it bad news?” to which my heart sank when she replied confirming it was. I wrapped the call immediately with my understanding boss and called her.

The conversation is a blur but Gill was upset and informed me that the scan had in fact shown they were monochorionic but that one twin was dangerously low on the growth centile chart and she was being advised to consider a TMFR soon. Then she said she was told they were going to be girls. What should have been a moment of joy and surprise was completely overshadowed by a sense of helplessness and worry whilst trying to understand the info she was relaying to me. Gill is medical so understands the implications and biological acronyms far better than me in these things! 

I’m ever an optimist while Gill can be a worrier so my immediate reaction when it sunk in was that fearing the worst that we could lose both babies was not something I allowed myself to contemplate. “It won’t happen to us”.

I tried not to dwell on this and put the uncertainty to the back of my mind as we nervously waited for more weekly scans to monitor things.

I resigned myself to being there to support her as much as I could as we debated the medical options along with the morality and theological implications of TMFR.

But in the uncertainty I was challenging my own beliefs on this which took me back to my days studying a medical ethics course at Uni. Questions around what is best for both girls, the bigger, more viable twin as well as us as a family if intervention or non-intervention left one or both twins with profound life-debilitating disabilities all came up. 

Ultimately I was of the view that it was Gill’s call as it’s her body but I would support whichever option she wanted to take. Fortunately we were on the same page and agreed that we would try to give them both the best shot at surviving and take things week by week. We weren’t ready to give up on the smaller twin yet. (We later called her Nina meaning “little one” in Spanish and because it’s a name our son really likes).

The scan the following week took an age to come round. Waiting in the ultrasound waiting room watching all these happy, excited couples or anxious alone mums was horrible. 

It gave us some false hope as the dopplers looked good for both girls and Nina was showing some small but steady growth. The Consultant reassured us that there was no need to intervene yet and that on this growth trajectory many babies can survive, even if they need to be very premature. I regularly marvel at the advances of medical technology and I tried to stay positive for Gill, believing that it would be an uncertain path ahead but everything would work out ok.

I was comforted by stories of friends who were other twin parents or who knew others who had been through similar complications and had good outcomes with twins surviving and thriving even though they were very premature and used those anecdotes to give Gill some optimism in difficult times. We hoped we could get through each week with some positive news to eventually get to a viable age where, if needed, the girls could be delivered and then we knew what would follow could potentially be months of hospitalisation until they were strong enough to come home with us. But we were well aware of the risks that could cause to both and were acutely conscious that this may not be in the best interests of the bigger twin, Sophie.

However, this glimpse of hope only lasted a week as we were soon back to hearing the news that it was very unlikely that Nina would survive to a viable age, or at least not without a high risk of potentially severe complications which could also harm Sophie.

Within a few days we went to see another specialist who agreed and with their advice we took the heartbreakingly tough choice to go with a reduction to try and give Sophie the best chance. Hearing that there was a 10-20% chance she would not make it either was daunting but we felt we had to try and surely we would not be in the unfortunate statistics. 

Knowing how helpless you are but also that Gill had to go through this having carried and felt them both moving was incredibly tough. 

I’ll never forget the anxiety and physical pain in my heart as I sat for what seemed like an age for 45 mins in a lilac bereavement room waiting for Gill to come out of surgery, mindlessly scrolling social media to pretend to take my mind off what was happening to my wife and our girls.

Then there was the unbearable wait overnight for the scan the next morning. Neither of us slept and the cold hard hospital floor of Gill’s room didn’t help. Even if it had been a luxury king-size, nothing could have let me sleep. The adrenaline and anxiety was palpable and we couldn’t wait to just get into that scan again to feel the relief of hearing a heartbeat from Sophie.

But deep down, we had a nervous sense of foreboding. Gill couldn’t feel any movements the next morning and the staff tried to reassure her that this was normal as the baby can be sedated too following the procedure, but I think we had a parental instinct and just knew. 

When we got to that room, the wait for the news and the hopeless search for movement felt like an age and will live with me forever as we received the news from the consultant that Sophie had not survived either.

It was a crushing sentence that will never leave me. After processing the devastating news we just wanted to be back to hold our other kids. Driving the few hours home was awful and an array of emotions ran through us from rational explanation to regret, second-guessing and doubt to tears and anger. 

This culminated in an overwhelming sense of anger when we parked up at our home to see a neighbour who had heard the news waiting to console us. We didn’t feel like seeing anyone else before speaking to our kids and family and I wanted to see my parents.

My wife just wanted to be left alone and went to bed. After seeing my parents and the kids I collapsed in grief before going into organising mode to let work know etc. And for the coming days I fluctuated between crying, organising and just having a sense of wanting to support and protect my wife and other kids. 

I knew no matter how hard I was finding it, I needed to be there and be strong for them. 

I was very fortunate to have good friends who have been through their own traumas with loss in life who were there for me and I could speak to and message. There were lots of supportive messages and I was open with friends who had known we were expecting and/or facing complications.

It’s cliché but I found talking and being open about my feelings really helped, as did writing it down in a message to people.

My mind soon turned to the fear of supporting Gill to hospital to deliver the twins a few days later. I began to catastrophize about losing her too and ruminate on what I’d do without her. Whilst I knew that was extremely unlikely I couldn’t help but feel things can still go medically wrong and further bad luck could come.

The experience in hospital was not the traumatic experience we had dreaded. The midwifery staff were generally amazing, sensitive, respectful, compassionate and supportive. They really put us at ease and did not make the delivery seem like the devastating ordeal it clearly should be. Rather, we were made to feel like this was the moment to meet and say goodbye to our girls all at once. 

Like every dad supporting the mother of the child in labour, I just wanted to do what I could to help put Gill at ease and be there for her. The sense of helplessness was awful though. At least seeing your wife in pain in a normal labour has with it the nervous excitement and expectation of a happy result at the end. Although that would not be the case this time, I was determined that we’d face it head on and get through this experience together and my role was just to support, listen and be strong. 

Being an optimist, I was immediately determined to turn this episode into something that would make our family stronger and reinforce our appreciation for life and the health of our family. 

I vowed that day that we would do something meaningful to commemorate the girls and ensure their conception, gestation and our grief had not all been for nothing and I was open with people about that.

That was the driver for us participating in Footprints Ben Nevis hike and our family hike of 24 miles from our first home in Edinburgh where our son was born to our new home. We were focused on turning this terrible period in our life into something positive to try and help others who have been through similar dark times. For me, I think that has helped process the trauma and allowed me to be open to the world about what we had been through so neither of us had to endure suffering in silence. 

We had a very personal, private cremation service where we read poems and laid flowers for Sophie and Nina and we have also planted trees in their memory near our home where we have scattered their ashes so there is always a part of them we can remember there. 

Personally I found this helpful and would encourage other bereaved fathers and parents to do something that they deem appropriate to remember their lost babies. It has helped me obtain some semblance of closure on that awful chapter in our lives, so I can compartmentalise it whilst never forgetting it. 

From time to time, the tears come back, but that’s ok, I’ve learned to embrace that and sometimes it makes me feel better to just let that happen and know it’s a natural part of the grieving process. 

I often think it’s incredible that in previous generations, dads would just have been expected to go back to work the next day or immediately and it would never have been spoken of to others. I’m sure bottling their grief and trauma would not have been healthy.

Every man will cope in their own personal way but it’s an important and positive development that it’s now normalised to speak openly about how experiences like loss make us feel and that charities like Footprints exist to support.