*Content warning: Sensitive subject discussed-
Ten days ago (15th October 2024) marked the end of "Baby Loss Awareness week" (BLAW) in the UK. A poignant annual event that started 22 years ago in 2002, it is held to remember and honour the lives of babies lost before the age of viability, born sleeping before 40 weeks, or who have passed away during their first month of life. As well as raise awareness, break the silence, and offer support to bereaved parents and families who have been through or are going through such a difficult life event. Formed by a coalition of organizations such as SANDs (Stillbirth and Neonatal Deaths), the Miscarriage Association, the Ectopic Pregnancy Trust, Tommy's and ARC (Antenatal Results and Choices) some of these charities have been supporting people through such losses since the late 1970s and 80s (which I am grateful for). A collaboration that has been instrumental in amplifying the week's impact and ensuring a unified voice for bereaved families, BLAW has become a powerful platform for parents to share their stories, connect with others who understand their pain, and advocate for better support services. It has challenged the stigma surrounding baby loss, encouraging open conversations about this delicate and often taboo topic. For example, after our loss, I remember one of my husband's family members (Great Uncle) telling us of a bereavement he and his wife had during the 60s (they already had a son and daughter at this time), but their third child died shortly after birth. After that they were expected to just carry on through their grief, where there was no support available, something I found incredibly heart-breaking. He had not really spoken about it a lot since then but wanted us to know that he understood what we were going through where we felt safe enough to be open thanks to BLAW.
Throughout this week of remembrance, various events, such as memorial services, candle-lighting ceremonies (wave of light), and fundraising initiatives, take place across the UK, highlighting the profound impact that baby loss can have on those left to grieve. BLAW has also contributed to raising awareness in regard to the need for improved healthcare services (the rate of national baby deaths over the past decade has been decreasing from 8.1% in 2010 to 6.8% in 2022), deconstructing racial biases (rates of neonatal deaths are higher still for babies of Black and South Asian ethnic groups) and providing access to mental resources within the NHS around loss (providing counselling via charities such as Child Bereavement UK). With that I would like to confirm that my husband and I are some of these parents, experiencing the loss of our daughter Angel in 2012. It was our first pregnancy and after trying to find closure in regard to what happened through genetic testing, we were just told that we were unfortunately one of the 4 in 100 statistically that will experience the loss of a child after the twelve-week mark of pregnancy. However, there is a grey area when a child (such as our own) has been born before 24 weeks (the age a child can be saved if born prematurely).
Despite giving birth and having the chance to hold my baby in my arms, her death was not recognised or recorded. I was given a compassionate 6 weeks off to recover from childbirth by my employer at that time, and to have my daughter's funeral (the directors we saw were empathetic and allowed us to have one despite Angel being born at 23 weeks) which was held just under a month after her birth.
Honestly, I do not know how we got through this period, I remember my husband breaking down seeing Angel's coffin at the funeral parlour and seeing him cry packing up the supplies we had brought in preparation for mid-October, which was when she was due. Likewise, it was heart-breaking having my breasts prepare milk for a child I could not bring home, I remember feeling really numb and empty trying to understand why all this had happened. My neighbours invited us not long afterwards to a BBQ and I remember having to leave when one of their guests turned up pregnant. It is not something I would wish on anyone, yet despite going through the very real emotions in regard to her death, her existence still felt invisible.
This year however I felt like there was some justice in regard to the charities mentioned above, who have been fighting to get recognition for the lives of those who were born too soon. Recently the government passed a legislation that recognizes the death of babies that have been born too soon. So, after 12 years I have now received a legal document from the UK government recognising that for a brief moment Angel was here.
