Baby Loss Awareness Week

Baby Loss Awareness Week, now in its 21st year, is an opportunity to raise awareness and to remember much loved babies.?I took part in an interview to share my personal baby loss experience, along with ways to support.

We really appreciate your openness on such a difficult subject. Can you tell us your personal story and experience of baby loss, including the journey you've been on?

We found out we were expecting twins just before Christmas in 2020. We went for a private scan, and I can remember looking at the screen and I couldn’t believe my eyes… ?two babies! It was the best surprise and most special feeling. Twins! Our babies were DCDA which means both babies have their own sac and own placenta. This type of twin pregnancy is considered the lowest risk, with routine scans every four weeks.

At 16 weeks we found out we were expecting a boy and a girl! My eldest daughter shared our excitement and she helped choose clothes for their wardrobe with matching outfits in pink and blue. We bought two of everything; two cots, two car seats, a double pram. We bought a bigger car. We started to imagine our life as a family of five and we were excited beyond words.?

At my routine 24 week scan our whole world fell apart. We heard those six words that shattered our world “I’m sorry, there is no heartbeat.” I had no pain, no discomfort, no signs that our baby girl had died. They believed she had taken her last breath within the last 12-24 hours. I haven’t got the words to describe the excruciating pain. It is a pain like no other. We were utterly heartbroken.?

The weeks following were a blur. I felt like I was walking on air most of the time, never present, just surviving. People told us that we were strong, but being strong was our only choice. My husband and I had to be strong for our twin boy and also for our 4-year-old daughter, who also had to process what had happened.

For the remainder of my pregnancy our scans increased to bi-weekly. We were anxious each week. Holding our breath during the scan until we heard the heartbeat of our baby boy, and then the pure relief followed. It was a weekly cycle of emotions, and it was physically and mentally draining. I know people were worried about how I was feeling having to carry our baby girl until her twin brother was full term, to allow him to grow. The truth is, I took great comfort in it. I felt I was able to protect her, to keep her warm, to rub my belly and know her peaceful body was in there.?

At 40 weeks I delivered our beautiful twins, Jax and Maeve, and brought them Earth side. A day with indescribable feelings where joy and happiness co-existed with grief and overwhelming sadness. But above all, it was filled with endless love for our babies. We got to spend time with Maeve and to hold her, which was truly beautiful yet heartbreaking.?

The weeks that followed were surreal and I’m not even sure if that’s the right word. Celebrating a new life of our baby boy, whilst arranging a funeral for our little girl. Celebrating each milestone of his first smile or his first steps, whilst thinking it should have been both of them. ?

Even 2 years on now, the grief still hits me in waves when you least expect it. It’s not something we will ever move on from, but more we learn to walk alongside it.?

What kind of support or resources did you find helpful during your grieving process that you believe others should be aware of?

We were fortunate to have a Bereavement Midwife at the hospital, who was brilliant and always at the end of the phone if we wanted to talk. Both my husband and I had weekly therapy sessions, which we started shortly after Maeve had died. I personally found this was the best support for me, as it helped me to navigate the trauma and to prepare me mentally for the birth. It provided the space to talk through feelings and to help process our journey.? There are a number of incredible charities out there including Sands and Tommy’s. I joined support groups including the Twins Trust Bereavement Group, which helped as there were other people with similar experiences who understood what we were going through.?

Baby Loss Awareness Week aims to break the silence and stigma surrounding baby loss. How do you think sharing your story can contribute to this goal? Baby loss affects 1 in 4 people. This could be a work colleague, a friend, a family member. Chances are, you come across bereaved families from baby loss, every day. For me, I think it’s important to break the silence and to not shy away from talking about baby loss. It shouldn’t be a taboo subject and a conversation to avoid. It is the reality of 1 in 4 of us. That’s 1 in 4 people who may need someone to listen, someone to support them, someone to hold a safe space.?

Are there any misconceptions or common misunderstandings about baby loss that you would like to address?

I found a lot of focus was on me, with midwives and doctors checking in on my mental wellbeing. Very rarely did my husband get asked how he was doing. The reality was, that he had to continue with the everyday- the school runs, the food shop, with working. He held us all together whilst his own heart was breaking. His world had shattered as much as mine, and I looked to him to tell me that we’ll be ok, and that we will get through this. I really encourage others to check in on the partners and close family members too, as more needs to be done here. We also experienced comments - more from individuals who did not know what to say, and I understand it’s not always easy to find the right words, but there are certain comments that stick with me “it wasn’t meant to be” “everything happens for a reason” “you still have the one twin.” When someone experiences baby loss, their baby is a precious life that is no longer. The memories they envisaged, the life they pictured is never going to be a reality. Nothing can replace your baby.?

How can workplaces, friends, family be more supportive to parents who have experienced baby loss?

For me it was about providing space and being prepared to listen when the time was right. Knowing that someone is there when you’re ready to talk- or even, if you’re ever ready to talk- means a great deal. I’ve also found certain dates to be triggering and I may not be fully present. Grief can catch you when you least expect it. It could be a song that’s playing on the radio or something that someone says that triggers a memory. I personally appreciate when others recognise key dates or show understanding if something has triggered a memory and I need to step outside a meeting for example.? A big one for me is when people say Maeve’s name and acknowledging that she is my child. As a bereaved parent, I want to keep my baby’s memory alive. Sands provide training in the workplace for managers and colleagues to understand how best to support individuals who have experienced baby loss. This is a great way to educate people and to build a compassionate and support place of work.?

Baby Loss Awareness Week is also about remembering and honouring babies who have passed away. How do you personally commemorate and keep the memory of your baby alive?

When Maeve died, the hospital used a butterfly sticker in my hospital notes to indicate baby loss so we wouldn’t have to keep repeating our story. The butterfly is something that we have continued to use as a family to symbolise our Maeve. At home we have a butterfly light in the garden, and it makes me smile whenever I look out into the garden. During Baby Loss Awareness Week we have the most beautiful display near to where we live, made of over 3500 pink and blue knitted hearts, to recognise our much loved babies. It’s a special place to remember our babies and it also brings together the baby loss community in the local area.? Baby Loss Awareness Week culminates with the global “Wave of Light” on 15th October. This is where people can light a candle at 7pm and leave it burning for at least one hour to remember all babies that have died too soon.

Finally, what message would you like to share with the broader community to encourage understanding, compassion, and support for those affected by baby loss?

Let them know that they're in your thoughts and when/if you're ready to speak, they are there. A “thinking of you” message when people feel alone, goes much further than most realise.