This blog post was originally a Facebook Live video interview within Gloucestershire Families, a group designed to provide regular useful content for families of all shapes and sizes.
Katie: Hello and welcome. Today’s topic is related to Baby Loss Awareness Week 2020 and is one that has become one very close to my heart in recent weeks and months. I had a miscarriage less than eight weeks ago and even though I went into that scan having some inkling that things weren’t quite right, it still fell like the world felt out from underneath me in that moment. I was totally unprepared for the way that I felt in the days and weeks afterwards. And since then, I’ve been talking to people, gathering my thoughts and sharing them online and one of the main things that I’ve learned is that there’s a major gap in the provision of emotional support from the NHS for families going through loss.
I did a survey about baby loss, largely just from my own circle of friends and family and out of the 23 responses I received, 22 said that they weren’t offered enough – or worse – any emotional support from the NHS. So it was really important for me to try and act on that information. I’ve invited Rachael Duggan, one of the trustees of Footsteps Counselling and Care, a charity that supports families through pregnancy-related issues, including the loss of a baby and at any time. I’m hoping that between us, we can help raise awareness of the topic and better prepare ourselves for the emotional impact that the loss of a baby can have on ourselves, our friends, our family and our colleagues. So, Rachael, thank you for being here tonight. Would you like to introduce the charity and tell us how you got involved in the first place?
Rachael: Sure. Thanks Katie. Hello everyone. I am a trustee for Footsteps Counselling and Care based in Gloucester. I, like lots of our staff, are volunteers. I came to Footsteps because, in 2015 our daughter Florence was stillborn at 37 weeks. I’d had a completely normal pregnancy, I’d sailed through it, passed all my milestones and had nothing out of the ordinary to worry about apart from a slightly high BMI, which is quite common. But, for no discernible reason at 37 weeks, she stopped moving. Like your experience, the bottom fell out of our world really.
It’s just the worst thing to happen to parents-to-be. It was overwhelming and those days and weeks that followed were equally horrible, with the post-mortem, the funeral and the change in the way people were with you, rather than congratulating you on your baby and wanting to meet your newborn and so on. I was very lucky that we were placed in the Snowdrop Suite in Gloucestershire Royal Hospital and we were assigned to the bereavement midwife. She was able to come and visit us for a number of weeks afterwards.
Then at the end of that six weeks, she said that she couldn’t come and see us anymore and she handed me a card for Footsteps. So I became a client. I was seen relatively quickly and they saw me for quite a period of time and through my subsequent pregnancy with our daughter, who’s now three and a half.
As a charity, there’s no set price on counselling; it’s a pay what you feel you can afford model. I wasn’t able to pay as I was on maternity allowance, but my way of giving back was to get involved with fundraising and in January of this year when the position of trustee came up, I joined the charity that way.
Katie: I’m sorry for your experience. Rachael and I had a chat earlier on to get to know each other a bit better and we were talking about the fact that I wasn’t prepared for being absolutely floored by the news that we’d lost our babies, and I was hugely emotional, despite considering myself to be quite a strong person. And since then I’ve thrown myself into talking about my experience and trying to raise awareness and Rachael actually suggested something that I hadn’t really considered, that what I was actually doing was a coping mechanism and was quite normal. Rachael, could you tell us more about the emotional emotional journeys that families will go through when they lose a baby?
Rachael: Baby loss, at any stage, whether that’s an early miscarriage, a late miscarriage, a stillbirth, is still a loss; you’ve still lost a child. When we spoke earlier, you mentioned that some people felt like early miscarriage was considered ‘too early’ to be considered a bereavement and this is something I became really aware of. I gave birth to a full term baby, and people always saw that as a different thing. But a baby at any stage is still a baby and it’s still a loss. And I want to take this moment to let you know that I’m not a qualified counsellor in any way; this is simply me talking about my experiences.
There are lots of stages of grief, such as anger, denial, acceptance. And you can go through those things in waves; there’s no linear path through that grief. And it’s a different experience for every family and so I don’t think there’s a typical situation. My experience was that, to start off with, I just felt completely numb, which may have been something to do with the amount of drugs I needed in hospital, but then when the drugs wore off, I just hurt. It was like a pain in my chest and my arms. There’s actually a charity called Aching Arms that provides teddy bears to bereaved parents because you get this aching in your arms because you haven’t got a baby to hold on to, so the idea is that the teddy is given to you in memorial of a lost child and gives you something to hold. My mum had actually knitted a bear for Florence and I clutched this bear for weeks. I was a 38-year-old woman going to bed every night with a teddy bear, because it had been with Florence in hospital and it felt like it was the closest I could feel to her. So I had this pain, this ache in my chest and then guilt that perhaps I could have done something to save her as well. I was paranoid and convinced that I’d caught my bump with a car door; I’d drank a bit of coffee in pregnancy, I’d had a cheeky weak Pimms. Was it something I did? Was it something I didn’t do? This was something that I find very hard for me to admit to, but you can buy home dopplers which are a piece of kit similar to what they use in hospital which allows you to (supposedly) hear your baby’s heartbeat. There are also apps that do something similar, but they’re just not safe. Rather than going into maternity triage, I Googled on my phone about baby movement and thought ‘Oh, she’s fine’. And what I should have done at that point is get up off the sofa, get in my car and go to get checked. So my big message after losing Florence was very much ‘Don’t use home Dopplers’. If you feel a change in your baby’s movements, please get up and go to hospital. It may be inconvenient, but it may say save your baby’s life.
Katie: Yes, some people don’t want to make a fuss, or to be told that you’re wasting their time. I know I’d heard horror stories about people being made to feel silly for going in to find out nothing is wrong, but when I had to go in for reduced movement myself, they were brilliant. My baby started dancing around the second he was on the monitor but they kept reiterating that I’d absolutely done the right thing by going in. So please do go in if you have any worries at all.
Rachael: That’s what I would say, speaking about Gloucestershire specifically, I’ve experience of both the Cheltenham and the Gloucester hospitals, and the staff are excellent. I cannot fault the care that I received with all my births. If you ask any midwife, they would always say they’d rather see you for ten minutes and reassure you, than turn you away and potentially miss a problem.
Katie: Thank you. Let’s talk a bit about things that can trigger you afterwards. I found that some of the things that triggered me emotionally afterwards were things like my clothes feeling tight. My clothes were supposed to be tight because I was pregnant and was going to have a baby but no, my belly had initially continued to grow after my babies had passed away as I’d had a missed miscarriage and then I began the emotional eating that meant I was just putting on weight. I felt really uncomfortable with that. I almost developed a phobia of having tight clothes on which I’m still getting over really. It’s funny how weird little things like that can just make you feel sad about what’s happened.
Actually, one of the things that set me off the most, was finding out that one of my friends had lost their premature baby. They’d announced the birth of their baby boy on the same day we found out we’d lost ours. He’d been born twelve or thirteen weeks prematurely and was doing really well and a few weeks later on the day of my operation, for some reason, I checked in on them to see how they were getting on, only to find out that their son had sadly passed away quite suddenly. I think the timing of everything meant that I felt somehow connected to them and to hear that awful news just hit me harder than anything else at that time. We’ve said that any loss is a loss, but in that moment, I just felt that their pain must have felt a million times worse than mine, having held their baby in their arms and them being alive and well, only for it all to go wrong. I knew how awful I felt about our loss and I just couldn’t compute how bad they must be feeling at that time. What sort of things set you off Rachael?
Rachael: I was in an NCT group in Cheltenham and I had to break off all contact with the people in the group. There were some really lovely people that would have become friends, but it was just too painful. One of the mums gave her daughter the middle name Florence and I was devastated because it felt like it was our name. I know that names are just names and that they aren’t property, but it just really hurt.
And for a long time afterwards, I found seeing people with baby bumps really difficult. On the school run, I’d see people who were pregnant and it literally sent me off into a panic attack. Car seats as well; the hospital make a big deal about you leaving the hospital with your baby in the car seat, so even seeing those would send me into a panic. I had a therapy called EMDR (Eye Movement Desensitisation Reprogramming) which is all about processing memories and thoughts and is particularly used for soldiers experiencing PTSD (Post-Traumatic Stress Disorder) and I found it very effective. It was like it flipped a switch in my brain so that seeing those things no longer triggered me. But what I do still find hard are milestones. Florence would have started school last September. So, I never got to take her photograph of her in front of the front door ready for her first day of school. There was a friend who was pregnant at the same time and she stayed a friend. I’ve seen her daughter grow up and I see those pictures and I often think they might have been at school together. It’s the ‘what ifs’. You learn not to resent people for it because they’re just living their lives and they’re carrying on and they’re enjoying their children, which, if our child had lived, is what we would’ve done. We wouldn’t begrudge other people’s joy because of our sadness. That took a long time to come to terms with. I was feeling angry and jealous, and I felt like a bad person for feeling that way. But actually, all of that is normal. It’s part of the process of grieving and processing what you’re going through, but I don’t think you ever really get better.
Someone once described grief to me as a ball in your stomach. When you first lose someone, that grief is a huge, big, heavy ball in your stomach and then gradually you grow around it and learn to live with it. And that’s what losing a child is like. Things aren’t the same. You don’t get better. You just become a slightly different person. It’s part of who I am now. We remember her, we miss her, but my life has gone on. And I think that’s really important when you’re at the start of any loss. It’s good to understand that it will get better. It hurts, but it will feel better in time. It was very, very painful and it was painful for a long time.
The other thing was, that I didn’t want to become known as ‘the lady who lost her baby’. I grew up and lived in a small town in Gloucestershire and I knew everybody there. So they all knew and some people were fantastic and would cross the road to come and see me to see if I was alright, but there were some who would see me and go in the opposite direction. It’s just hard to know what to say.
Katie: There are things that I’ve said to people in the past that could have been insensitive, but it’s only when you see it from a different perspective that you begin to understand. It’s also really easy when you’re in that emotional state to react to things that are meant in a nice way or are perhaps an innocent question. Within a week of my miscarriage, I was out with Oliver and someone asked me if he was my only child. I wanted to say something but instead I was just very British and just quietly said yes and went into myself feeling really awkward and upset in that moment. Do you have any advice about what people should say or perhaps not say to someone who’s gone through this?
Rachael: It depends on the person really. I was made redundant before I had Florence, so I didn’t have any work colleagues to return to and worry about at that moment, but being on on the school run and in the school playground was really hard. There were some well-meaning but poorly executed comments including ‘So did they tell you what happened? Did something just go wrong?’ or ‘Well at least you’ve still got your son’. Another one was ‘Never mind. You’re young. You can try again.’ I also had lots of friends who said that she’s with the angels now and she’s in a better place. I’m not religious and they are and that’s fine, but I found that difficult to accept. She’s not in a better place, because the best place would be with me. I think in that moment, people are just trying to think of something to say, and I do feel it’s probably better to say something than nothing at all, because the lack of acknowledgement, the silence adds to the taboo of child loss. My biggest piece of advice would be to just say ‘I’m really sorry’.
Katie: It happens to us too I guess. I vividly remember having a conversation with someone who said ‘You’ve had a rough time, haven’t you’ and I was just saying ‘Never mind, never mind.’ I didn’t know what else to say but was then angry at myself for saying something so ridiculous. I do mind! But you don’t want to make anyone else feel bad. We have to understand that they don’t know what to say either.
Rachael: That’s it. If you’re talking to someone who’s experienced loss, something like ‘I’m sorry; I don’t know what to say but I’m here if you want to talk to me; equally, we don’t have to talk about it at all’ would be fine. It doesn’t need to be anything intense, just maintain your friendship as that person hasn’t changed. They’ve just had a horrible thing happened to them. I found it useful when people used Florence’s name. It gave her a place in the world. Some friends asked to see photographs and sent personalised cards. That really meant a lot. Other friends brought chocolate and food. There was a group in the town that basically put a rota together and brought me meals for a fortnight. Another friend offered to walk my son to school because I was frightened about running into people. Practical support was really helpful as well as the lovely little keepsakes and things to put in her memory box. I’ve still got all of those.
I have a friend that, every year on her birthday, sends me something star-themed. Her funeral was all about the stars and how we’re all made of the same stuff as stars. It’s inspired by something professor Brian Cox talks about and that really resonated with me. I don’t personally believe in angels and babies on clouds but stars made sense to me. That was helpful for me, but that might not be helpful for others.
Katie: You talk about people acknowledging her name and giving gifts, that reminds me of something. In fact I’ll take you back a little bit. When I became a mother for the first time, it ignited something inside of me, a a passion for family that I hadn’t really had before. My upbringing was tense at times and it’s not really a time that I look back on fondly. So when I had my own baby and had my own little family, it was suddenly like – Oh my God – I get it! This is what it’s mean to feel like. I quickly became very grateful for the fact that I had had a healthy baby. I’d never really come across loss before, but I suddenly had this deep empathy for women who just weren’t as lucky as me. And it came a few months later, maybe six months later where I discovered and decided to volunteer for a charity called Remember My Baby. The charity has volunteers that go into hospitals and provides photography for parents like yourself, Rachael, who’ve been bereaved before, during or shortly after birth. It’s very much about breaking down the taboos and giving photographs to parents that they can proudly show off, because their own photographs may have unpleasant reminders that you don’t necessarily want to show to people. Those families will never get to have the moments that you look forward to with your children and capture those first birthday photographs or first day at school photos. So Remember My Baby provides them with tangible memories that they can always look back on. And I remember that one of the last families that I photographed for them was for an Indian family who had this full-on celebration with all the wider family there – because that’s what they would have done if their baby had come into this world alive. It was surreal, but so heartwarming and so lovely. And I know from my experience of working with Remember My Baby and meeting the midwives and bereavement midwives in those situations that they are always talked of highly by the families that have been through that situation.
We’ve covered some big topics there Rachael, could you finish off by reminding people what support is available to them?
Rachael: In a situation like mine, a stillbirth, you would be referred to the bereavement midwife, but that’s not always appropriate and unfortunately wouldn’t be offered to people in situations such as yours. If you’re struggling, then your first port of call will always be your GP. If you’re not comfortable talking to your usual doctor, ask to speak to someone else. I would be very surprised if within your practice there isn’t someone who is a mum or a dad who this will strike a chord with and can help you and/or signpost you elsewhere. Any loss is a massive, massive thing and it’s OK to need support to get through that.
Secondly, as I mentioned, I’m a trustee for Footsteps, which is based in Gloucester but serves the whole of the county. Footsteps looks after parents of children who have died at any stage, so that could be early miscarriage, late miscarriage, stillbirth, neonatal death as well, also infertility and childlessness as that’s a form of child loss in itself. There are various ways to get in touch with Footsteps and we have a strong presence on Facebook and Instagram. If you message us, somebody will get back to you. We’re not a crisis service so we can’t always respond immediately, especially over the weekend, but everything is read and and followed up.
The counselling at Footsteps is excellent; they literally helped put me back together. We do have a little bit of a waiting time at the moment, but what I would say is that we’re now able to conduct online counselling as well as face to face, so we’re seeing more people. You might be placed on a waiting list of X number of weeks, but we might get to you quicker. But if you’re not known to us and not in the system, then we can’t support you.
There was a Gloucestershire Sands (Stillbirth and Neonatal Death charity) group but unfortunately there weren’t enough volunteers. I’ve spoken to one of the previous organisers and they are looking for someone new to run the group. So if there are any parents here that would be interested in starting a Sands support group, the please get in touch with Sands HQ directly because it would be fantastic if there was a Sands Gloucestershire group again.
Tommy’s, the baby charity, has some excellent information on their website, such as articles about how to talk to a colleague, how to support friends and how to deal with your loss.
If you feel like you’re in crisis and you need to talk to somebody right now, please do seek out the various services available online locally. The NHS has increased funding for counselling and mental health within the county and although it might not be directly relevant to your loss, they will be able to help you in a more immediate capacity while you’re waiting for counselling with us or someone else. As I mentioned, Footsteps won’t turn anyone away based on income and instead use a ‘pay what you feel you can afford’ model. Some people aren’t able to pay much and instead come back and fundraise or volunteer for us and that’s great.
Baby Loss Awareness week culminates in the Wave of Light at 7pm on 15th October where families are encouraged to light a candle for an hour to remember our babies. It’s a difficult week for families who’ve experienced loss as it’s in your face everywhere. So please remember to take care of yourself. Take a step back if you need to and don’t immerse ourself in all things baby loss if it’s becoming too much.
Katie: It’s worth mentioning that you support people who’ve gone through loss years and years ago as well, so it doesn’t have to be something that’s fresh in your mind. It sounds like it’s an absolutely brilliant charity and for those of you who know my business will know that I’ve chosen to support charities through my photography packages. I currently support two local charities as part of that and, having spoken to you today, I’d really love to support Footsteps too. My job is all about helping people who are going through pregnancy and having their babies to stop and celebrate those moments, but for all those people, there will always be more who need support from a charity like yours. So I will work out how it’s going to work in practice but I will definitely be including Footsteps in there in future.
Rachael: Oh, that would be amazing. And any support is really welcomed, whether that’s physical, financial, whatever. We have people that do all kinds of amazing things. We had people running the virtual London marathon for us last Sunday and earlier this year, well before restriction began, an amazing couple organised a ball in memory of their daughter on what would have been her fifth birthday and raised an incredible amount of money for us. It was all about her little girl and it was just the most wonderful evening. People also have cake sales or birthday fundraisers on Facebook. I really like supporting a local Gloucestershire charity because you know that the money goes to helping families in Gloucestershire; it doesn’t go off to a big headquarters somewhere to pay big salaries. We put everything into supporting parents.
Katie: Well, hopefully we can support you in that going forwards. Thank you so much, Rachel.
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