Whispers of hope: Shedding light on baby loss with Tommys

In this heartfelt episode, we open up an important conversation around baby loss — a topic often shrouded in silence and stigma. Joined by a representative from Tommy’s, the UK’s leading pregnancy charity, we explore the emotional realities of miscarriage, stillbirth, and premature birth. Together, we shed light on the powerful work Tommy’s is doing to support families, fund life-saving research, and improve care pathways to help more parents bring home healthy babies. Whether you’ve experienced loss yourself, or want to better understand how to support others, this episode offers space for reflection, empathy, and, above all, hope.

Transcript

Transcript

Natasha (00:00)

This episode is brought to you by Biogaia, a probiotic brand trusted by families like yours. From newborn drops to daily support for all ages, Biogaia is one of the world's most researched probiotics. Available at larger Boot stores.

Simon (00:15)

The team at the Project Baby podcast thought it was important before we get into this week's episode to put a short message here. This is a special episode for Baby loss Awareness Week. Some people may find the subjects covered in this week's episode triggering or difficult to listen to. It was a very difficult episode to record and Natasha's experience and journey with Baby loss make this a very deeply personal episode.

We also had to make a decision about how to edit this episode and ultimately as a team and in particular Natasha decided that honesty and authenticity are a crucial part of this conversation. Baby loss is a difficult journey and a hard reality and that's a reality that we've decided to be faithful to in this podcast. If you or someone you know have been affected by the subjects covered in this episode, please do check the show notes for links to find help and support. Thank you.

Kate (01:04)

See someone walking along the street. You okay? Sorry, don't. I'm sorry. I didn't know. Don't be sorry at all.

Natasha (01:11)

I felt like this, this was a really good idea. Now I'm feeling like it's not.

I’m fine . No, it's okay.

Welcome back to the Project Baby podcast, where today we will talk with Tommy's and we have got Kate here from the midwifery team at Tommy's to talk about baby loss. Welcome. Thanks for coming. So baby loss is a topic really close to my heart. I lost a little boy at 33 weeks called Buddy. And I just want to make sure that we share enough information out to our readers who could possibly be suffering with their own baby loss journey.

Kate (01:36)

Hi, thanks for having me.

Natasha (01:55)

So what support does Tommy's offer for baby?

Kate (01:58)

So, Tommy's is here to support anyone affected by baby loss, whether that is the person themselves that has been pregnant, that's lost the baby, whether it's the partner, whether it's you're going through surrogacy and that pregnancy has ended unexpectedly, you've got a friend or someone who's coming back to work. There's so many people, we know about half of people within the UK know someone who has been affected by the loss of a baby. So, we're talking about a lot of people that this is really close to their heart too.

We want to really be there and be as accessible as possible for anybody that's been affected by the loss of a baby. Our main, the team that I manage, I'm very biased but my team is brilliant. We have a lovely team of midwives that work at the charity. So anyone can call us or they can email us. And we're here for emotional support. We aren't counsellors, but we are very used to talking to people who have either been through loss, been affected by loss.

We can be a listening ear. We can also help you to navigate the NHS services. Sometimes the NHS can be a bit wild and it can be a little bit hard to know where to turn or what to do or what services are available. So we will try and signpost that person to access the help and support that they need. Services are changing all the time so we try to keep on top of it, but we will try and support that person to get the support that they need.

And sometimes even just picking up the phone and just saying something out loud can be really cathartic and it can really have a profound impact on somebody. Some people will call us and they'll say, I don't know why I'm calling. I don't know what I'm expecting, but I just needed to talk to someone and that's absolutely fine. I've sat on the phone and there's just been complete silence and that's okay to wait until that person's ready to say something. Other people will just

it will just be a complete offload and that is also okay. So we will adapt with what that person needs at that time. Some people can't face picking up the phone and that's absolutely fine. So they'll email us and we will get back to you and again, signpost you to further information as well. We also sit within the pregnancy information team. So there's loads of support information on our website as well. So if you're just wanting to look for information, looking for guidance,

There's loads, it's tommys.org, just have a look on there and there'll be loads of supportive information and signposting on there too. And predominantly, Tommys is a research charity and we're here to try and reduce the rates of loss and try and stop the heartbreak of baby loss. And so we fund research in various centres around the country, researching into miscarriage, into premature birth.

and into stillbirth as well. So that's where a lot of the money that amazing people fundraise go to is actually researching and trying to get that research onto the front line. So we know that it takes generally a long time to get research into practice. We specifically have a research centre whose job it is to speed that process up and get that research to the front line. The amount of people, something will come out in the headlines or they'll see something and it feels like

beacon at the end of the tunnel and they're like, I want this, I've been through five, 10 miscarriages, I've seen this bit of research and sometimes it's not always available but we're here to try and get that research into practice as quickly as possible so it benefits as many people as possible.

Natasha (05:35)

Yeah, that's really important, isn't it? How can friends and partners help each other and help a loved one? Because like you say, I don't think anybody is immune to knowing somebody else who has suffered.

Kate (05:53)

Absolutely.

I think the first thing ⁓ as a partner or someone that's close to someone that's been through loss is recognising that, as you said, you're not immune yourself. You need that support too. And whatever that form that comes in is going to be different for everybody. Also recognising that the pregnant person, that woman and the partner may grieve in very different ways. So for some people, they feel like they want to get back

to work, they want to crack on and they want to keep going. For some people they're just, I can't do that, I'm not in the head space, I cannot do that. And so it's getting the support for them. So at Tommy's we have a whole Dads and Partners Hub, which is a great starting point for again information and support too. But again, just recognising that you both will be grieving in different ways and different timelines. And grief is really complex. There'll be some days where you might feel

Actually, I'm okay. I can face the world today. And then sometimes you could either see someone walking along the street. It's okay. 

Natasha 

Can we stop. Sorry. I'm sorry. 

Kate

Don't be sorry at all. I didn't know whether to stop or not.

Simon (07:16)

Do what you can. Do what you feel you can. When you feel you can't, it's okay.

Natasha (07:31)

Okay, fine. Where were we?

Kate (07:36)

So Tommy's has a whole separate hub for dads and partners. It's being reviewed by dads and partners. ⁓ And so there is a really great starting point to have a look at for some support information and where to go if you need that additional support. But yeah, it's recognising that you both will grieve in different ways and grief has different timelines. Some days will be okay, other days will feel a lot harder. Some days there will be triggers that come out of nowhere.

⁓ And so it's being kind to yourself and recognising that, but also talking to each other, just stopping and just talking. And sometimes the amount of people that say, do you know what's when I'm cooking dinner? When you actually sit and face each other, it feels a little bit intimidating and it feels like there's a little bit pressure to say something or say the right thing to each other. But actually when you're cooking, it's a classic if you've got someone in the car with you and they'll disclose something because they're not looking directly at you. ⁓

⁓ It's just that, you know, going for a walk or cooking dinner or something just takes the pressure off. But really hearing what each other's saying. Validating each other's feelings and recognising that it could be different for each other and that's okay.

Natasha (08:52)

Can partners pick up the phone and talk? ⁓

Kate (08:55)

Absolutely,

yeah, we definitely get dads and partners calling us, same with family members. Absolutely, and I think the fact that it's anonymous as well, people feel that sometimes that's a little bit of a barrier that comes down because they think, actually, I don't need to say who I am. Sometimes that feels a little bit too personal. Some people just want to test the water a little bit. So absolutely, we have dads and partners calling us.

and we will talk through how they're feeling, how they can support their family, what's going on at the moment. Sometimes a lot of partners have questions about their care. Sometimes things can happen all in a blur and they're not even sure. So that's what's really unique about us being midwives as opposed to say just bereavement support. I'm not saying just bereavement support, it's incredibly important, but we are clinicians, we're healthcare professionals. So we've also can bring that clinical aspect of support as well.

and talk through maybe any sort of more clinical questions or navigating that NHS as well.

Natasha (09:56)

Yeah, I

think that's really important because I think when you have experienced that, it sometimes does feel a little bit like because you didn't take baby home that actually like who's there for that additional support afterwards and of course the midwife still visit for a little bit. Yeah. But it's just sometimes you've got questions at different times because you've not got anything that you're actually concentrating on apart from what you should have

Kate (10:19)

Yeah, and you need time to process. know, it's so much to process and even begin to get your head around. It takes a long time. So the bereavement might be there for a few weeks, but I mean, this is a long-term process. This is life-changing process. This is not something that just, you know...

Natasha (10:39)

doesn't go away.

You've obviously spoken to lots of families over the years. What kind of things have you seen to keep baby's name alive?

Kate (10:52)

All sorts. And what I would say is anything is okay. ⁓ You need to do what means something to you and what's going to be practical and helpful for you. And that looks really different for everybody. For some people, they might write a letter to their baby and keep it in a special memory box. For other people, they might have a special candle and say on anniversaries or special dates that are important to them, or just when they're thinking about their baby, that's okay.

light the candle. Baby Loss Awareness Week, you know, there's a special time that everybody sort of lights their candles and remembers all babies that have passed. And you know, some people might plant a tree, again, sort of like memory boxes, it really is different. Some people, you know, fundraise, I can't work for a charity without putting that in, can I? But really, genuinely though, when I go to...

kind of go to the London Marathon, the London Landmarks, you know, all these amazing events that people run crazy distance and jump out of planes and do amazing things for. It's so emotional because people are so focused on the event and then it suddenly hits home as to why they're doing it. And you see a lot of emotion and it's really, really strong often on these days. So yeah, doing events.

Whatever works for you essentially. But again, we've got lots of information on our website too. So if you're looking for ideas, there's that too.

Natasha (12:25)

I’ve got a couple of questions. Can Tommy's help years on? Say for example I'm seven years on, if I was to pick up the telephone tomorrow? Yeah.

Kate (12:35)

Yeah,absolutely. As you said, like grief, doesn't go away. Losing a baby changes you as person, it changes your life. A lot of people will say it changes the path, the direction that they thought they were going to be on and actually that's changed a little bit. It can be up and down. You know, grief does that. It says that some days are great and you're fine, you can be at work, you can do what you need to do. Other days, it just feels like you can't even get out of bed. You can't do anything. And sometimes there's no rhyme or reason. There might be no reason for it, but that's grief and that's okay. You need to embrace that. And it's really healthy to have a good cry, do what you need to do. It's more concerning if someone doesn't embrace that grief. And sometimes that comes out in unhealthier  ways. Some people are feeling really angry, they're holding it in. Some people might turn to drink or drugs or something else just to try and just...take their mind off thinking about what has happened, but actually go through that process, that grieving process is so important. We do know, whilst we don't offer counselling, but we'll absolutely talk to anybody. We have people who call us grandmothers who 50 years ago, they lost their baby. We will absolutely talk to anybody. But what I would say with counselling is we do know that the best time is within the first year of having lost your baby.

So if you are going through loss, it might feel like a really big task trying to navigate where to go and who to talk to, but we can support you with that. And in that first year is the most important time to get that more structured support, but absolutely anyone can call us at any time. We're not fussy.

Natasha (14:23)

And then I've got, my baby was born at 20 weeks. Can I still get a birth certificate?

Kate (14:30)

So the definitions of sort of miscarriage and stillbirth becomes quite clinical and we define a stillbirth from 24 weeks and that's when a death certificate can be produced for that baby. Before the 24 weeks, so in your example at 20 weeks,

to that person who's a baby, most people or a lot of people will refer to that loss as a stillbirth and that's completely valid. Some people feel that calling a 20 week loss and miscarriage doesn't sit quite right. It doesn't match the level of their loss or what's happened or how old their baby was. So those terminologies, it's very clinical. But you can now get certificates online.

So you go on the government website and it's almost like a certificate of recognition. So it's not an official death certificate, but you can apply and this is at any stage before the 24 weeks. You can get a certificate to recognise the loss of your baby. It's completely free and they will send that out. So you've got a certificate. Because a lot of people quite rightly in a very valid way felt that they'd lost their baby. And it's almost like...It was so unofficial, like no one seemed to... one's recognising. Yeah, recognise it. And there was no record of your baby and it just didn't sit right. And it's something, it's part of a big pregnancy loss review and it's definitely something that Tommy's supported to campaign for. We've had so many people that were calling us before this came in saying, nothing's official. It's like my baby didn't exist, which of course is not the case.

Yeah, so definitely go on the government website to find that.

Natasha (16:21)

This person says they feel like they've lost lots of friends since they lost their little one. What can they do?

Kate (16:29)

Yeah, unfortunately, it's not uncommon. ⁓ I think when it can be incredibly lonely and isolated and generally in society, we don't talk about baby loss that much. People are quite uncomfortable. People don't really know what to say. It's still a little bit of a taboo. ⁓ you know, when you start talking about it, it's amazing how many people will be like, I've had a loss as well in whatever form that looks like miscarriage, stillbirth, neonatal death.

And so when you do start talking about it, it's amazing how people will confide and say they've also had a loss themselves. But a lot of people do say it is lonely and isolating. Sometimes people will feel supported right at the beginning. So people will be sending things or, you know, asking, are you okay? But it's almost like it gets to the stage where the world just seems to keep going, but it stops for you when you've had that loss. You know, everyone goes back to work, they go back to their...

daily life, but you're sat there and your life has completely changed. And you're just right at the beginning of that journey. ⁓ And so we want people to keep checking in. If you've got a friend that's had a loss or know somebody, write down the anniversary, try and remember when it happened, when their birthday would have been, when their due date would have been. These are times that are really triggering for that person that's had that loss. ⁓ And so those are the days.

that that person might just need a little bit of extra support as well. Ask that person, what did your baby look like, particularly if it's a later loss, what do they look like, what colour hair did they have, have you got any photos or footprints? A lot of parents that have lost a baby want to talk about their baby and want that baby to be part of the family, that baby is part of the family forever in whatever shape that looks like. So, you know, don't be afraid to ask questions and people are really worried about saying the wrong thing. But a lot of bereaved parents say to us, we would rather someone say the wrong thing than feel really awkward like the elephants in the room and not say anything at all. So just say anything, even if you think, this is really obvious. Say the name of the baby, ask how that person is doing. Just remember what they have gone through and what they have been through. At Tommy's we also run a...parenting and pregnancy a work scheme that's supporting colleagues in recognising people who coming back to work after a loss. Because again, people are a bit like, what do we say? Do we just carry on as normal? What do we do? And so it's some training for managers and colleagues to really recognise that coming back to work after someone's had a loss is huge, absolutely massive. And you thought that was going to look different and it doesn't.

And particularly if someone's had a loss before 24 weeks, you don't generally get your maternity leave. You might have to come back so quickly, what feels like so quickly. And that can be really, really a big challenge. So if you've got supportive colleagues around you, understanding colleagues, flexible colleagues, managers that know their policies, know how to support someone, that can make a huge difference. But yeah, remembering anniversaries, special dates and just remembering that baby as being part of that family and using the baby's name.

Natasha (19:51)

I’ve got some good friends that actually every birthday they do another one. And I think at first they were always worried that it would make me cry. And it does. But it doesn't mean it's bad. So I think I would say to anybody who was listening to this is actually buy the flowers, buy that candle, it’s special.

Kate (19:55)

Yeah, absolutely.

Natasha (20:19)

So let's talk about why you wanted to be a Tommy’s midwife.

Kate (20:24)

Yeah, I would say, I know this sounds a little bit cheesy, but it's a real privilege to be a Tommy's midwife. I qualified as a midwife about 14 years ago. And, you know, I did all the rotational, I was on Labour ward, postnatal, antenatal, out in community, I did that for a few years. And then I didn't really know about Tommy's. And then I was supporting a family who had lost a baby. And I felt so underprepared.

I felt like in our training, we got very minimal training into how to support families going through a loss. ⁓ It seemed there was so much paperwork, it's almost like a minefield. And I thought, this is, there's got to be a better way to support people. And then I came across Tommy's and all their information. ⁓ And so I started off, it's sort of, I applied to work there because I thought not only the...supplying all this really amazing information that cuts through all this kind of social media and is evidence-based, it's reviewed by healthcare professionals, but they're also funding all this amazing research that's actually doing something about it. So the charity is not only doing the funding, the research, but actually taking it through to the front line and actively supporting people as well. And I thought that's just really unique. And the helpline is the only helpline really of its kind that is available.

It's completely free, it's manned by midwives who are very highly experienced and highly skilled. You've got amazing people on our team that have all different various clinical backgrounds ⁓ and it's really truly unique and amazing service if I do say so myself. ⁓ And so I've worked there for 10 years just because I can't leave because I just love it. I'm so proud of the service that we offer, the difference that we make to people. Just this morning we got an email through which I can't go into details because of confidentiality, but it was a very classic feedback of what we get of just, I've had more support in that email than I have had in the last 10 years. And it's just making sure that people know what's out there, what support there is and making people feel really heard. So that's why I'm just really proud. And I think I'll probably work there till, I don't know, I retire and beyond, I don't know. They won't be able to get rid of me.

⁓ But yeah, I just absolutely love it.

Natasha (22:47)

There's going to be lots of our listeners who are going to want to get involved and want to support Tommy's. And obviously this is Baby Loss Awareness Week. How can they get involved and how can they fundraise for Tommy's?

Kate (22:59)

So there's lots you can do and you don't have to run a marathon, I promise you. Some people can and they will, great, go for it. But a great place to start is on our website. There's a whole page on there which lots of different ideas. So ⁓ if you want to do something that's organised, that's done for you, you don't have to think about it, it's just there for you. ⁓ Then you can ⁓ either enter through our website or speak to our fundraising team as well, all their contact details are on the website.

Or you can do whatever you want. If you want to have a bake sale, if you want to have a sponsored walk, if you want to jump out of an aeroplane or bungee jump off a bridge, you know, whatever you want to do. Our fundraising team are amazing and they will support you in that. If you need ideas or if you need support with something ⁓ or ways of setting up a Just Giving page, anything, then they would happily support you. So we get lots of people that might have a small business and they might donate a certain percentage of their profits to Tommy’s. We have companies that said that, you know, do their charity of the year. ⁓ And we have lots of amazing people that nominate us for their charity for their company. And they do loads of amazing fundraising through work. So it can be anything and everything. You don't have to run miles, wherever suits you really. So have a look on the website and see.

Natasha (24:22)

So obviously we know there are people who are at high risks. What's Tommy's doing to support them?

Kate (24:29)

Yeah, so we are here to support everybody, but we know maternity is in the headlines at the moment. There's been a big review that has been announced and that probably has been quite triggering for a lot of people, particularly if you felt that your care wasn't what it should have been during your pregnancy and if that did result in either a traumatic birth or the loss of a baby. So that can be really triggering at the moment. The statistics in maternity are pretty stark.

We know from EMBRACE, which is a national sort of documentation which looks at various statistics within maternity, that there are certain groups of people where it shows there are higher rates of loss. And that's generally for those who are black or black mixed heritage or those who live in areas of higher deprivation. And so that's what Tommy's is trying to focus on at the moment is those who are really at the highest risk as well as trying to reach everybody as well.

So a couple of ways that we are doing that, we do have ⁓ a specialist support service for those who are black and black mixed heritage. ⁓ So if that's you and you need either support during your pregnancy, so it's not just for loss, any pregnancy questions, you can go onto our website and book a call ⁓ and a midwife will call you back at set time and you'll have that protected space to talk to a midwife as well. ⁓

We also have a miscarriage support tool on our website as well. Again, it's completely free. So you go onto our website and if you've had a miscarriage before, there any loss before 24 weeks, you'll answer a few questions. It's not too onerous. And it will give you a little bit of an idea as to if you're planning another pregnancy, is there anything you can do to try and lower your risk of miscarriage next time? Now, sometimes it could be some really basic lifestyle things, some little tweaks, something that...people might not have realised or it might be actually you do need to go and speak to a specialist or speak to a GP and have a chat about it. Those people that feel that in, again, if they are at high risk of a miscarriage, if they are living in an area of higher deprivation or are black or black mixed heritage, then again, it will send you through to a call with one of our midwives at a dedicated time, which is protected space that we can call you back at a set time and support you as well.

And then looking more widely at our research centres, they have definitely been tasked with ⁓ involving people who are at higher risk within their research. So making research really accessible to those who may be a little bit, it might feel a little bit daunting, where you're not even sure where to start or how to get involved in research. So it is really specifically looking at certain groups of people who may be at higher risk of loss or pregnancy complications as well.

Natasha (27:23)

Lovely. Thank you so much for coming onto the Project Bady podcast. If our listeners want to be able to find out more, what is the Tommy's Web?

Kate (27:31)

Yeah, so it's www.tommys.org and on there you'll find all the information and support and you'll also find the numbers for our Midwife helpline and our Midwife email address as well. So head to the website and hopefully you'll see everything on there.

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Kate (28:33)

Are you okay? It's a lot saying it out loud, isn't it?