Welcome to the latest addition to the It Still Takes a Village – Working in Baby Loss Interview Series where we take a closer look at those who dedicate their day to day to preventing baby loss and supporting those affected. You can read more interviews, here.
There is sadly such a range in the bereavement care available currently in our hospitals – but there are some that seem to have got it right. This interview gave me hope – hope for the families that sadly have to say goodbye to a baby or child. To know that they are people out there with such passion, drive and care looking after these families is just wonderful. Please, meet Luana…
So, to start us off, please can you let us know a little about your current role?
I currently work in East and North Hertfordshire NHS Trust as the Perinatal and Paediatric Bereavement Officer. I have worked here for the past 13 years and have been in this line of work for the past 16 years. I love my job and no day is ever the same; one day I can be arranging funerals for families who have had a late miscarriage, stillbirth or termination for fetal anomalies and the next day I can be sitting with a family offering support after the sudden unexpected death of their 13 year old. I have a wide scope of responsibility dealing with everything from early miscarriages to deaths of children up to 18 years old.
The majority of my time is spent dealing with families who have had losses during pregnancy or quite soon after birth. My duties include arranging individual funerals for the babies whose parents request it and liaising with funeral directors when families wish to make their own arrangements. I create mementoes for parents such as hand and foot prints, locks of hair, hand and foot impressions in clay and I assist our photographers when parents request photographs. I arrange and prepare babies for viewings and will sit with the parents if they wish or give them time alone with their child. I also arrange for the transfer and return of babies to a specialist referral centre when a post mortem is requested.
“My experience motivated me to change the way this hospital dealt with losses of any gestation, it still motivates me to this day. Luckily I was in a position where I was able to instigate changes.”
What motivated you to do the job/role that you are doing now?
My career has been long and varied but always within the same area of mortuary work and bereavement care. In 2009 I had a miscarriage and the treatment I experienced at the hospital (the one I work in) left a lot to be desired. I remember the doctor looking at the forms in front of him with confusion and I had to tell him which parts I needed to sign. I also remember another doctor, who had just confirmed on a scan that my baby had died, asking me if I was alright – I thought that was the stupidest question he could have asked me and I told him so. I know he didn’t intend to be insensitive but at the time it really hurt.
My experience motivated me to change the way this hospital dealt with losses of any gestation, it still motivates me to this day. Luckily I was in a position where I was able to instigate changes.
In what ways does your current job/role allow you to get involved in the baby loss cause?
The main part of my role is about supporting parents and families after the loss of a baby and occasionally, after the death of a child. The Trust I work for does not currently offer any bereavement counselling so it’s about pointing families in the right direction to any support they may require further down the line and essentially just being there for them immediately after their loss. I quite often arrange hospital funded funerals for parents. I think more often than not, it is just too big a task to face up to for some families – they were planning for the future and now have to plan for a funeral.
I also give training to student midwives, midwifery staff, gynaecology staff and doctors. It is so important that everybody is working together to provide the best possible care before, during and after such a traumatic time.
What are the biggest frustrations or constraints that you face in supporting those affected by baby loss or preventing baby loss in the first place?
I work in the NHS and as much as I love the NHS it is so underfunded and it can also be a postcode lottery depending on where you live. I wish we had more money to provide better facilities, more staff, better aftercare. I wish I had more time, to give each family undivided care and attention. It is so frustrating not being able to provide the best of everything all of the time but luckily the NHS has some amazing staff who go above and beyond to provide the best service possible.
Do you think that Baby Loss is still a taboo, and if so, why? Do you encounter issues with it being a taboo in your day to day work?
Yes, I do think that baby loss is still a taboo subject. I think it frightens people because it’s not the ‘natural order’ of things, babies aren’t supposed to die, elderly people are. I spoke with a lady recently who said that her own mum had told her to ‘shut up and stop speaking about it, I can’t deal with it’.
When I get asked what job I do I can usually guess the reaction I will get; “oh…(followed by silence)” or “I don’t know how you do that” or quite commonly “doesn’t it make you sad?”
I think there is still a lot to do around making baby loss a subject that people feel comfortable talking about but progress is slowly being made with campaigns by charities such as SANDS.
“Without my colleagues and these charities my job would be so much harder and I am grateful that I get to work alongside such caring and compassionate people.”
Who else do you work alongside in terms of baby loss support or prevention? Are there any charities that support you, or perhaps a colleague/volunteer that you couldn’t manage without?
Although I am based in the mortuary office, I work closely with the bereavement midwife and the team on the Consultant Led Unit (CLU). We have regular catch ups and a database that is accessible to appropriate members of the team, where we can document things such as contact with the parents or when a funeral has been booked.
We have regular Multi Disciplinary Meetings with the chaplaincy team, the photography team and midwives and nurses from CLU, Early Pregnancy Unit, Gynaecology ward and the neonatal unit.
We have two charities who provide us with the most beautiful memory boxes, 4Louis and SiMBA, and I will be forever grateful to them for allowing us to be able to create such special memories for the families in our care. 4Louis also provide us with moses baskets and smaller baby ‘pods’ – all completely free. We also are lucky enough to have 3 cuddle cots, one provided by 4Louis and the other 2 donated by parents who have fundraised for us.
Without my colleagues and these charities my job would be so much harder and I am grateful that I get to work alongside such caring and compassionate people.
“Knowing that my job can help to make things a tiny bit easier and that I can give them the right support and advice is what keeps me going. No-one should face baby loss alone.”
When the job/role is hard, what one thing reminds you to keep on keeping on?
Anyone working in the NHS right now will probably agree that it can be very tough at times – the financial constraints, the lack of time to get everything done and the constant pressure to do more with less. The thing that keeps me going when it all gets a bit too much are the families, ones I have looked after in the past or currently and the families who I will look after in the future.
We all know how scary and confusing it can be when you’re suddenly thrown into something you have no control over, so we can only begin to imagine what these families / parents are going through. Knowing that my job can help to make things a tiny bit easier and that I can give them the right support and advice is what keeps me going. No-one should face baby loss alone. I was in town earlier this week and walked past someone I thought I recognised. I realised it was a parent I’d looked after last year who had a stillborn baby boy. He didn’t notice me but the best thing for me was that he was pushing a pram with a new baby inside and that made me feel so happy for the rest of the day.
We are in a shift change with the understanding and awareness of baby loss. What would you say to someone just starting out in a job/role associated to baby loss?
For anyone starting out in a job associated with baby loss I would say be prepared for it to be difficult and emotional, to always try and do your best for the families you look after but also realise when you need to step back and look after yourself for a bit too. Most of all I would say be prepared to do the most valuable, precious job you will probably ever do and to feel proud of yourself for doing a job that so many people say they couldn’t do!
It’s likely that a newly bereaved parent is reading this. What would you like to say to them?
If there are any newly bereaved parents reading this I would say, firstly that I am so sorry that you are going through this but please know that there a huge team of people around the country whose job it is to help, offer support, even just listen when you want to talk. Never be afraid to talk about your baby, never feel as though we don’t want to listen because I can honestly tell you that we do. We want to be there for you and walk through this journey with you, we want to answer your questions and help you create memories, we want to help you do whatever it is that you want or need to do to help you get through those first days right through to after the funeral and whatever your next step is. We want to be there and we will be while you still want us to be.
This blog post is part of an ongoing spotlight on those working in baby loss. To read more from It Still Takes a Village series, visit the hub page here.