Baby loss remains a taboo subject so I'm sharing my story in raw detail to help others out there

Here's my story of grief, love and hope.

13 Oct 2018

Fifteen babies die shortly before, during or after birth every day in the UK. Despite this shocking statistic, baby loss remains a taboo subject. The author set up @joshuaslegacy17 on Twitter and Instagram when her son Joshua died to connect with bereaved parents and raise awareness of grief and baby loss. Here she tells her story of grief, love and hope.

I fell pregnant with Joshua very quickly. My husband and I were so excited to have a baby. Although I suffered from nausea and pelvic pain, I had a really healthy pregnancy. Once I passed the second trimester, we started filling the nursery - we bought a cupboard, crib and cot. My sister gave me a nursing chair and a Bugaboo. I started a Pinterest board to gather ideas for the nursery and bought a pregnancy pillow to support my growing bump at night time. I was pregnant at the same time as many of my friends. We shared in each other’s happiness and compared notes. I thought about our children playing together and becoming great friends.

At 31 weeks gestation, my world fell apart in an instant. The doctors discovered Joshua had a severe and complex pulmonary arteriovenous malformation (PAVM) on a late ultrasound scan. It was caused by a rare and little understood condition called Hereditary Haemorrhagic Telangiectasia (HHT). We were told Joshua might not survive the rest of the pregnancy or birth. My husband and I were absolutely distraught. The news was completely unexpected and my 20 week scan had been normal.

We were worried Joshua would be severely disabled and feel pain, but we also held onto the hope he would undergo surgery after birth and survive.

We decided to continue with the pregnancy despite being offered a termination. We cancelled our NCT classes and stopped planning the nursery. Every week we attended the hospital for more scans and check-ups. I told my work about what had happened and they were very supportive. I was scared to hold onto hope, but at the same time my love for Joshua grew every time I felt him kick or saw him on the scans. My husband and I tried to relax and enjoy the rest of the pregnancy but it was very difficult. We planned a weekend away but in the end, we were too scared to be far away from the hospital in case the worst happened, so we decided to stay in a hotel nearby.

Joshua was so strong and made it to full-term. On Mother’s Day and two days before my planned Caesarean section, my waters broke. My husband was at work and I was unable to reach him. I sent him a Whatsapp message saying, “I’ve gone into labour!” and he replied, “are you joking?!” which made me laugh. I phoned the hospital and they told me to come in straight away. My brother raced to pick me up and take me to hospital while my husband made his way there from work.

The hospital had planned for this eventuality and had all of my notes in order, including a plan for resuscitation. We heard Joshua cry once before he was whisked away by the doctors. The medical team gave him injections and worked on him for an hour but the PAVM was too powerful. His heart couldn’t cope anymore. We spent the last two hours of Joshua’s life having skin to skin , taking photos, cuddling and kissing him. After spending two nights in hospital with Joshua by our side in a cooling cot, it was time to say goodbye. We held an intimate funeral with immediate family. I remember my parents sobbing, telling me how strong I was and how I would get through this. I also remember standing next to Joshua’s grave in utter disbelief. I couldn’t get my head around the fact I was heavily pregnant two days ago and now Joshua was being lowered into the ground. Even to this day, 18 months on, this memory still shocks me.

People were understandably speechless when we told them the news. It was an unthinkable and unfathomable life event which left all of us ill equipped to navigate. I was surprised at people’s reactions - I received a card from friends and when I bumped into one of them on the street, they asked me how I was. I said, "I’m guessing you heard about Joshua" and they said they hadn’t - so either they were pretending not to know or someone had signed on their behalf. Others admitted they felt helpless and worried they might say or do the wrong thing. A lot of people’s reactions was to say, ‘don’t worry, you’ll have another baby’ as though another baby could ever replace Joshua. I couldn’t understand how anyone could think that. The best thing people did for me was to acknowledge his birth, that I was still a mother with a child and always would be Joshua’s mother.

After connecting with other bereaved parents, I realised I was not alone in my experience and baby loss was a subject which desperately needed more openness and less avoidance. When other people referred to me as a parent and acknowledged I still had that status, it came as a relief. It started when the neonatologist told us we were “wonderful parents”.

A lot of people were kind and thoughtful. Our home and lives were filled with gifts from friends, family and coworkers. It made me happy when people included Joshua’s name on cards. I loved seeing our names written next to each other reminding me that we are still a family. Others gave us art work about Joshua, planted trees and gave charity donations in his memory. He is part of our family and to have him erased is beyond painful.

These gifts reassure us Joshua has not been forgotten and that he has a place in our families and the lives of people around us. It is every bereaved parent’s worst fear that their child will be forgotten.

As both a clinical psychologist and a bereaved mother, my ideas about death and grief have been challenged. We are taught that grief goes through neat cycles and stages but my own grief has taught me something different. It is messy and painful and not an experience you “get over”. Keeping Joshua’s memory alive has been a huge part of my grieving process and allowed me do more difficult activities such as meeting other people’s babies.

I try not to dwell on the times people have pretended to not know about Joshua, avoided talking about him or implied it’s better to forget about him and “move on”. Instead I try and focus on all of the great things people have done to preserve Joshua’s memory. It has not only helped ease the grief, but has also helped others feel they can do something to help, at a time when they felt helpless. Grief happens in a social context and trusting Joshua and other babies will be talked about and remembered helps me move forward. Most importantly, it helps society move towards breaking the taboo and silence surrounding baby loss.