To mark Baby Loss Awareness Week (9-15 October), this blog comes from Nicola Phillis, Senior Programme Manager for NHS West Yorkshire Integrated Care Board

 

Content warning: Please be aware that the following article involves aspects of baby loss and grief and may be triggering for some people. Details of support services are at the end of the article.

Nicola Phillis and familyThis year marks the 22nd year of Baby Loss Awareness Week in the UK. This is a week for everyone in the baby loss community and beyond to come together to remember our much loved and missed babies. It is also an opportunity to raise awareness of the impact of pregnancy and baby loss and the importance bereavement support plays. Pregnancy and baby loss is often a taboo subject. The theme this year is ‘breaking the silence.’

Hello, my name is Nicola. My husband and I have been very privileged to be able to bring four children into this world, my daughter Esme and my three boys, Myles, Emmett and Auryn.

Tragically, my daughter Esme died from sepsis in 2015. She was 2 days old.

Not many people truly understand how much is lost when a baby dies. You don’t just lose a baby, you also lose the 1, 2, 10 and 16 year old she would have become. You lose first steps, Christmas mornings, loose teeth, and first days of school. You lose it all. I miss everything about Esme, her kicks, hiccups, flutters, the warmth she brought to me, the wriggles every time I ate a bowl of shreddies. No one will ever know the strength of my love for her. Esme was the only one who understood my heart from the inside.

When my grief was fresh and new, I made an attempt to hold onto and juggle each emotion in my arms – registering Esme’s birth and death, funeral arrangements, explaining the sad news to friends and family and shattered hopes and dreams for my baby girl. My hands became so full that I could no longer carry them all. The smallest thing would trigger my grief and cause me to drop everything – an emotional disorganised, embarrassing and exposed mess to clean up.

I used to find myself in situations (including the birth of my boys) where I should have been happy, but the pain of Esme’s death would hit me like a ton of bricks. Pain that I never knew was possible. If the pain didn’t hit, the guilt would. There was a sense of a betrayal and the only way to prove my love for Esme was to be sad. How can a mother smile or laugh after she had cremated her baby? How can her heart let her? How can she dare to love again?

My experience is not isolated. Every day 13 babies die before, during or shortly after birth (SANDs) in the UK and evidence suggests that 15 out of 100 pregnancies end in miscarriage (JPU Report 2023). Everyone copes in different ways.

I can’t pinpoint the moment when I found happiness again, but with the help and support from Martin House Children’s Hospice, my grief now sits alongside my happiness. The two words feel very much out of place so close together, but grief has taught me so many powerful lessons and helped me to channel my energy to try and make a difference and positive impact on the lives of many.

Last year, I proudly joined the Lived Experiences Voices group for the newly established Paths Service in West Yorkshire. I shared my voice, views and expertise of my lived experience. It was here that I was able to support the development of this service, a new maternal mental health service dedicated to supporting women and birthing parents experiencing moderate to severe mental health issues related to birth trauma, baby loss or severe fear of pregnancy and birth (tokophobia).

Paths is a psychology and midwifery-led service that can support mums and birthing parents who have had baby loss from early miscarriage to neonatal loss up to 1 year old. A much needed service to fill an existing gap which offers a range of therapies including compassion focused and prolonged grief therapy as well as specialist support from Paths Midwives.

I’m pleased to tell you that this week, the baby loss pathway in West Yorkshire was launched. This pathway nests alongside a network of partners including maternity services, Forget Me Not Hospice and other West Yorkshire services to support referrals for complex and prolonged grief as well as severe mental health needs as a direct consequence of baby loss. The service also carries out inclusion work to reach communities who have a significantly higher rate of baby loss and neonatal death. Paths - South West Yorkshire Partnership NHS Foundation Trust

I’ve been out with my boys conker picking this week. I laughed, as we all goofed around and had fun. I didn’t immediately think of Esme. I waited for the guilt to hit, but it didn’t. My heart and mind has done with being sad and I want to live in the present. I sat my boys on Esme’s memorial bench, and snapped a pic to keep her memory alive, but I didn’t play out the ‘what ifs’ and ‘if only’… I honoured Esme and then carried on collecting conkers.

It is inevitable that there will be times that make me sad, watching my boys grow up without their sister, watching children that would have been her friends get taller and grow older and knowing that everyone else moves on with their lives. I have learnt that grief can sit alongside happiness, and I hope Paths will help other parents find their happiness too.

If you have been affected by baby loss then reach out to your GP or health professional for advice on what support could help you.

You can also contact SANDs, a national organisation who offer a safe space to grieve and find support whether you are a parent, grandparent, sibling friend or professional.

www.sands.org.uk
Helpline 0808 164 3332
Email: helpline@sands.org.uk

If you have urgent mental health needs please call 111 option 2.

Please also do not forget our West Yorkshire Staff Wellbeing Hub, www.wystaffwellbeinghub.co.uk. The Hub is not a crisis service but provides support for staff struggling with work-related mental and emotional distress.

Thanks for reading,
Nicola