Whilst having my usual morning coffee and reading the newspapers this morning, I stumble across the following headline: "Premature baby 'left to die alone in sluice room' at failing NHS hospital". My heart sinks and my stomach turns. My first thought was "Not again"?.
For the last decade I have headed up The Foundation for Infant Loss Training, an organisation that is passionate about raising perinatal bereavement care standards in the UK.
Following the loss of my own daughter Marnie to SIDS in 2004, I was appalled at the lack of care and support given to me by healthcare professionals. A feeling of "falling out of the system", no counselling was ever offered to us, terrible cliches used by "educated" health professionals (At least you know you can get pregnant!, Have another baby!, God needed a special Angel!) resulted in us feeling incredibly alone, isolated and the knowledge that nobody cared.
Furthermore, I was expected to attend my six week check two days after the loss of baby Marnie at the same time as other mums (picture the scene - lots of very happy mothers holding their noisy babies sat in the Doctor's waiting room, whilst I sat alone in utter shock, without my little one). Where was the basic care and concern?
I was also sent my daughter's post mortem results directly at home, in a plain brown envelope, with no warning of what was inside. The contents of that report will stay with me until my dying day. I did not need to know that Marnie's organs had all been removed and then put back in again. I did not need to know that samples of her brain, heart and liver had been retained. I would love to say that my terrible experience was an isolated one. I cannot tell you that.
Over the years I have met with thousands of bereaved parents who never cease to shock me with their tales of horror and lack of support following the devastation that is the loss of a baby. In some trusts, stillborn babies are still being delivered in delivery suites to the sounds of babies crying, excited visitors arriving with bunches of flowers and congratulation balloons. I have even heard of "the Bounty woman" not being informed that a grieving family are saying goodbye to their baby by staff and have burst in, with an excited squeal of "Congratulations" and "Let's have a peek". Parents also frequently complain that they are not being given sufficient time to spend time with their baby. One couple advised that they only spent twenty minutes with their son who was born still, at term. When I asked why that was, they responded with "The bed was needed and the midwife kept looking at her watch". As a healthcare professional, the most precious gift that you can give to these families, is the gift of time. Because this is the ONLY time these families will ever have. Families have also advised that they felt they were given a lack of informed choice. One mother requested that she have skin to skin when her stillborn baby was delivered and she was told that this was not the done thing. Parents are often in a sense of shock and will take the authoritative judgement of the midwife or nurse as gospel. This mum said that this was one of her biggest regrets and she now resented the midwife for telling her that her request was "not allowed". Another mother informed us that she was never given the option to take her baby home, and she wish that this had been explained to her. Taking baby home is not for everyone, but surely all of our bereaved families should be given the option?
Both mothers felt that these memories that they COULD have had with their babies had been taken from them. As a bereaved mum, I do not think there is anything worse than regret in this situation.
Memory making is so important when families do not have the privilege of taking their baby home, or even ever hearing the sound of their baby cry. There are some fantastic charities such as 4Louis who provide NHS trusts with memory boxes, casting kits and inkless hand and footprint kits. These are free of charge and are accessible all over the UK and beyond. So why is it that we are still working with some families who have had a stillborn baby this year and have never been offered a memory box?! Why is it when there are fantastic Bereavement photography charities such as Remember my Baby available that some families are walking out of maternity without some beautiful photos of their baby? These resources are in place, they are free, so there should be no excuses whatsoever.
In 2014 Panorama broadcasted a damning documentary which found that foetuses were being discarded with clinical waste in some NHS trusts in the UK. The public were outraged, including many of the parents who had left their baby at that trust on the belief that their baby would be treated with the utmost dignity and respect and whom would be safe and taken care of. Many of us assumed that following this media outcry, that things like this would change. Yet we are here again. So how can we ensure that things do change? How can we ensure that standards of bereavement care are not dependent on your postcode? The geographical lottery? It is simple. Through education. Infant loss is one of the biggest taboos in the UK and we all need to work hard in breaking down the barriers and stigma that are associated with the loss of a baby. My organisation work tirelessly in training healthcare professionals in infant loss across the UK so that they can best support the families and enable the family to have the very best experience that they can have with their baby.
We deliver study days across the UK and also offer a E-learning course in the same area (which is FEDANT and Royal College of Midwives Accredited). We also will deliver our National Infant Loss Conference in London in March 2017.
The collaboration of all professional services is key in ensuring that bereaved families are fully supported and are not left "to get on with it" or a feeling of falling out of the system. Through education, I hope that the harrowing headlines that I saw this morning, will soon be a thing of the past.
The Foundation for Infant Loss Training