October is baby loss awareness month, specifically 9th-15th October is baby loss awareness week. On the 15th October there is a global wave of light, at 7pm wherever you are in the world everyone is invited to light a candle for all the babies who have died.
This is the first baby loss awareness month which has directly affected us after our son Lenny died at 40 weeks just after he was born due to a cord accident and losing our second son Bhai at 18 weeks in July. The truth is though that baby loss awareness week or months isn’t for bereaved parents – bereaved parents are aware of baby loss every second of every day. It is to raise awareness amongst those fortunate enough not to be directly affected by baby loss. One of the key aims of Lenny’s legacy is to raise awareness and educate those who are not directly affected so that they are able to best support bereaved parents. This is why……
So why raise awareness? How is it helpful? Simply put it is to break the silence and the taboo so that:
- Bereaved parents are less isolated and can be more supported and understood in their grief;
- The public are educated to understand that baby loss in all its forms is much more prevalence than most people realise;
- People can have more open conversations with family, friends and employers to explain the impact of baby loss and to get the support they need;
- Contrary to what appears to be popular belief – talking about it does not make it more likely to happen to you – it is not contagious! Actually with increased awareness some babies in some circumstances could be saved (for example pregnant women might be more informed to raise concerns if they experience reduced movement);
- Research can be done to reduce stillbirth rates – the current research which has been and is being undertaken in stillbirth is a tiny tiny proportion compared to other medical issues; and
- Policy and practice develops to prevent babies dying and to support bereaved parents in situations where it isn’t preventable.
Since Lenny died so many people have said to me that talking about baby loss scares people. My response to this is that I will stop talking about my kids when everyone else stops talking about theirs (ie never) they are my beautiful boys not a dirty little secret. It is true that pregnant women could be fearful of loss but knowledge is power and people need to be well-informed to make the best decisions for their children and in some cases raise concerns which could save their babies. Pregnancy and childbirth haven’t become safer over the years but our medical interventions have improved. I don’t talk about this to scare anyone, I talk about this because I now understand the prevalence of baby loss and I have to do something about it.
But what can we do as individuals? Well a fellow bereaved mum shared a petition on Instagram (https://petition.parliament.uk/petitions/620177) for people to sign so that parliament discuss making it routine to measure a placenta which would require a few measurements to be taken during a scan. This is already routine in the specialist Rainbow clinics across the country so it is doable, but people have to have lost a baby late in pregnancy to ever have access to these clinics. The placenta is an organ which is grown during pregnancy and provides the baby with nutrients. There is a correlation between babies having a small placenta and being stillborn. Many of these babies die in the womb at full-term, they are perfectly healthy but aren’t being sustained by the placenta. So often this happens in otherwise low risk, healthy pregnancies. The only medical intervention required to save their lives in many cases is to be delivered earlier. For baby loss awareness my one request is that people email their local MP and request that this change is considered in parliament.
Take note that the petition is entitled ‘fund placenta measurements’ so there is recognition that this requires some additional resources and cannot be expected in already stretched maternity services without this. This additional measurement which could lead to an induction or c-section is far less costly than prolonged hospital stays in a bereavement suit, internal investigations, post-mortems, national investigations, funerals, the time parents have off work, the cost of additional care in future pregnancies and in some cases law suits.
None of this would have saved Lenny, I know this because the post-mortem showed his placenta was the right size. Incidentally, I happened to have a positioning scan at 38 weeks which showed he was perfectly healthy – the scan was praised in a national report for its accuracy and quality. However, the scan didn’t show how his cord was wrapped, often scans cannot show this – it is my hope that technology can be developed to see the cord more accurately so that healthy full term babies do not die in cord accidents. I do know that this simple change could have saved a precious little boy called Eli. Eli’s amazing mum knows that this change sadly will not bring her boy back, but she wants to effect change for other families. These are healthy babies and low risk pregnancies – it could be your friend, your sister, your cousin, your colleague, your acquaintance.
Sending an email to your local MP will not make it more likely to happen to you or anyone you love and care about – if anything this could reduce the stillbirth rate!
You can find out who your local MP is here: https://www.theyworkforyou.com/mp/. I have attached a template email which you are welcome to use. So please do light a candle on October 15th at 7pm and let any bereaved parents you know that you are thinking of them and their babies. But if saving lives is more your jam please consider this email!
Thanks your support
Mim, Roy, Lenny and Bhai xxx