Black All Year - Black Baby Loss

Baby loss is more prevalent in Black communities in the UK than in white communities and yet Black women and families access the support available to them less often. Following the loss of her son, midwife Alicia Burnett decided to do something to address the lack of relevant and targeted information for Black and mixed Black heritage people who've experienced baby loss and has created Black Baby Loss Awareness Week (15 - 21 May 2023).

Hear about the challenges faced by Black women; the systemic racism that contributes to higher baby loss rates and the lack of representation that means that they don't access the available support, and find out about how Black Baby Loss Awareness Week and Alicia are working to address some of these challenges.

Guest contact information:

Instagram:
https://www.instagram.com/blackbabylossawareness/
https://www.instagram.com/midwife_alicia/

To book future events - https://tinyurl.com/bookBlackAllYear

 

Original music by Wayne C McDonald, #ActorSlashDJ
 www.facebook.com/waynecmcdonald
www.mixcloud.com/waynecmcdonald

Steph Edusei LinkedIn https://www.linkedin.com/in/steph-edusei/
Steph Edusei Instagram https://www.instagram.com/stephedusei/

Original music by Wayne C McDonald, #ActorSlashDJ
www.facebook.com/waynecmcdonald
www.mixcloud.com/waynecmcdonald
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Transcript

Black All Year - Black Baby Loss

SUMMARY KEYWORDS

baby, midwife, loss, Black, hospice, experience, child, support, pregnancy, work, Black women, pregnant, 

SPEAKERS

Steph Edusei, Alicia Burnett

Steph Edusei  

Hi, everybody. Welcome to this Black All Year episode and this is only available as a podcast. If you're listening to this and enjoy it, please like and subscribe and it will make sure that you don't miss any future material and it will also help others to find the content. 

I'm Steph Edusei and I'm going to tell you very quickly why I started Black All Year. Every October I'm invited to talk to a range of audiences about equality, diversity and inclusion, about being Black and about being a Black female leader. And whilst I'm always happy to do it, I got really frustrated that everyone wants to talk about race in Black History Month in the UK, but then it all went quiet all year round. And we are Black all year round. I kept saying we should do year-round events, but nothing happened. And because I'm that kind of person, I thought if nobody else is going to do it, then I should make it happen, and Black All Year was born. 

So, for over a year now we've run events and the aim is to highlight the issues, challenges, achievements and experiences of Black people who are the minoritised global majority. And every so often we do episodes that are only available on podcast, and this is one of them and I'm really delighted to introduce Alicia Burnett and this is a registered midwife with personal experience of pregnancy and baby loss and a professional experience of providing support and care to families affected by baby loss. Black and mixed Black Heritage women in the UK are disproportionately affected by pregnancy and infant loss and we we've actually done an episode again, it was a podcast only episode on black maternal lives and the disproportionate amount of women that actually die during childbirth. But because of this disproportionate amount of people that are affected by pregnancy and infant loss, Alicia founded Black Baby Loss Awareness Week, and this is an awareness event that's designed to raise awareness of pregnancy and baby loss support services within Black communities. So hello, Alicia.

Alicia Burnett  

Good morning. Thank you for having me, Steph.

Steph Edusei  

You're very welcome. How long have you been a midwife, just out of interest?

Alicia Burnett  

So, I began my training in 2017. I fell pregnant very quickly after joining the course. And I, so I became pregnant in 2017 had my son November of 2017 and I lost him in May 2018; returned to my studies and I ended up qualifying in June 2021. So, I've just about reached maybe around 18 months of my training now, yeah, qualifying. Sorry.

Steph Edusei  

Yeah. And how are you finding it? Because I always think I always think of all of the areas of kind of that nursing field and I know midwives aren't nurses necessarily, but it's always the area that I think actually probably brings a lot of joy, but I can imagine can bring a lot of pain as well.

Alicia Burnett  

Well, I was a paediatric nurse before I became a midwife, so I loved that, I really especially loved looking after the little babies and the families. But I went into midwifery because I would meet unwell babies, especially babies with a lifelong or life limiting conditions. And some of those you can actually prevent in the antenatal period. So, I always wondered, what is it that went wrong? Or that what care was not received when this mother was pregnant that resulted in this condition and in her baby, so I wanted to train to be a midwife to see what I could do to contribute to preventing or supporting women with like, more preventable or, I just saw some sad things.

Steph Edusei  

Yeah. 

Alicia Burnett  

To see what I could do. 

Steph Edusei  

Yeah, it's interesting you say that because in my day job I run a hospice and we have a children's and young adults hospice as well as adults, and we see a lot more people from diverse ethnic backgrounds coming into our children's service. So, whilst it's completely anecdotal, and I don't have any facts or figures to back it up, it's really interesting to hear what you've said and the context of what we're going to be talking about today. And then just reflecting on my own experience about that, that, that the amount of young people with life limiting illnesses, and we know that some of them probably could have been preventable for a whole range of reasons. 

Alicia Burnett  

Yes. Just quickly, I didn't know that you were involved in hospice services. I actually got to take my son to a hospice, and it was the hospice that I did a placement at when I was a student nurse. So, I knew about the service. I got to take him there and I knew it would be beautiful. I knew they'd be kind. I don't think enough people know about hospices, what they do, and that there needs to be a lot more funding. And you're a superhero. Thank you. 

Steph Edusei  

Well, I just make sure that the team have what they need to be able to provide that care, but it's great to hear that and you're absolutely right. I mean, maybe a future episode, for Black All Year will be about hospice care, because not enough Black people know about it, know what it is and use it so, so yeah, and I'm so pleased that you got to have that care at the end of your son's life. So, tell me I mean, it's maybe a little bit obvious but what kind of prompted you to start Black Baby Loss Awareness Week.

So, after losing my son, I didn't really talk about my loss. I just went back to my training. I actually cared for women that had lost children lost their babies, I cared for families that had lost their babies, and I never disclosed because, it's not about me, it's about them. But that experience informed the care that I gave. I was more gentle. I was kinder. I listened more. I spoke less. I let them tell me what it was they needed, and rather than trying to impose what the guidelines said they should have, the care they should receive, I was a lot more receptive to what they needed as individuals. It just made me a better person in a way. 

Alicia Burnett  

He changed me, he changed who I am. But I didn't really talk very much about my loss. Not until about last year when I spoke about my loss openly at a conference. And I wasn't speaking as a midwife I was speaking as a mother, as a bereaved mother, and how, so I actually had a daughter in 2021. She's downstairs now causing quite the racket. But I spoke at a conference last year about how my previous experience of bereavement informed how I approached my next pregnancy. And then from there, I actually got a job with Tommy's. So, Tommy's is a baby charity and they have a specialist area where they look at miscarriage so they lead on a lot of the miscarriage research. And we provide a lot of information and support to women and families that are affected by miscarriage. And I work on the specialist support service for Black and mixed Black Heritage women. And a lot of the phone calls are from women who are having losses while they're on the phone to me or are pregnant after having had a loss and they have not received the care anywhere near as much care or input as I did when I lost my son or when he was unwell. And it's really important that we access services because it can, it's almost like putting on a suit of armor that gets you prepared for what is to come. If it, whether it's being pregnant after loss, or whether it's you've had a loss and you need to, you just need that support to anchor you. You need that support to get out of bed every single day. You need someone to talk to and I was finding that a lot of the women I was speaking to just weren't aware of the support that's available. That's very humbling. I'm sorry.

Steph Edusei  

No, no, not at all. And I'm interested that you didn't feel that you could, that you didn't speak to people about what had happened to you. Why was that? What was it that kind of made you reluctant to talk about it?

So, when I went back to my training, I hadn't thought about what I would say when people. So, the course is three years long. I had to take about a year off after having my son, so when I went back, I wasn't going back to study with the same people. They were a whole new cohort of student midwives. And I hadn't considered what I would say when people asked me why I'd taken the year off. So, when I was first asked, I said, "oh, I had a baby". And the second question was, "oh is he at nursery" and I goes no, he passed away. And I hadn't considered how jarring that is for another person to hear. For me, it was my life. It was the truth. It was what it was. But that particular individual then took it upon herself to try and find out what had happened to my son, the circumstances around his death. She went to people in my original cohort to try and find out what had happened. It was very gossipy. I felt very, I felt very isolated. I felt very exposed and vulnerable, and based on that experience. I just stopped talking about him. I took his picture off my, my home screen on my phone. I just shut down because I wasn't in a supportive environment.

Steph Edusei  

I'm so sorry you had that experience because that's; yeah, I mean talking about death and dying anyway is hard. I think and you know, quite often people when they've lost a loved one and somebody you know, if somebody comes and says oh, you know, my father died, or my sister died or whatever. It's quite hard to know what to say, when that's a child and particularly a baby. It makes it even more difficult. So, the fact that that you've then been, I'm not surprised that people didn't know how to respond to that. But the fact that you got that that kind of response that that then shut you down. It's just awful. So, I'm really sorry that you experienced that. Do you notice I mean, interesting. You talking about the calls that you get coming through. Do you think this is something that is particularly an issue for women of Black heritage, and that they that they don't know how to access the services? Or is it just that there are more of us who have this experience of baby loss? Do you have a sense of actually if it was a white person, a white woman who had lost a baby do you know whether they would have better access to services, better knowledge of what's out there?

Alicia Burnett  

That is what I find actually, I find that although Black and mixed Black Heritage women have poorer pregnancy outcomes, we have, women and our babies, we have higher incidence of stillbirth, neonatal loss, pregnancy loss, even though we have we're greatly more greatly affected, I find that we don't, for example, the whole reason I started Black Baby Loss Awareness Week is because the existing events that commemorate the loss of babies, the loss of pregnancies, I didn't see anyone that looks like myself. So, it's not surprising that my community doesn't know about things like the awareness events and about things like the support services. It's not at all surprising. If you don't have Black people working in these institutions. If you don't have Black people represented in the promotional materials they put out there. If you don't have support groups that are tailored towards the Black community, how are you going to reach them? We are there, we are having these experiences. It's for those institutions to extend a hand and embrace us. Let us know that you're there. You're doing fantastic work, but we don't know about it. You know that we are more greatly affected, so you need to mobilise and do the work to reach us. And that is what I'm hoping to do. I'm hoping to not roll out the red carpet or anything but to say, look, Sis, did you know that this exists? I know you're going through it right now. But when you're ready, here's my website. It has all of the institutions regardless of what you're going through, if it's ectopic, if it's a molar pregnancy, for the chemical pregnancy, if it's a stillbirth, there's a page for you, and all of the resources that are available are right here. Take your time. When you're ready, it's there.

Steph Edusei  

And because you've mentioned the website, tell us the website address now and we'll come back to that later but tell us it now just

Alicia Burnett  

So I've not, a criticism that I received, and it was a really well received criticism, was that (this is my reason why I came to you actually) is that I had a call with somebody that I really respect, another Black woman that is really making waves in the baby loss community, speaking openly about her experiences and actually she's one of the people that inspired me to just do it. She said I really love what you're doing. But why is it just a week? Black women are affected by baby loss all year. It's not just a week and I think you need to do away with the with the week aspect. I thought, okay. I hear you, I receive what you're saying, and you're absolutely right. So, my website is actually called BlackBabyLossSupport.com.  It's available all year round. And it just collates all of that information in one place. Because when you lose a baby, you get thrust all this paperwork, and you're not, your eyes don't work. Your eyes are full of tears. You just can't, from the stuff, that paperwork you have to sign to even get your baby's body released from the hospital. Someone has to go to the registry office to do paperwork there and it's like I can't breathe right now. I can't. So I wanted a place, a hub of all the resources in one place and that is BlackBabyLossSupport.com.

Steph Edusei  

Right. Yeah. And I think it is an interesting wasn't it because we need that, we need that real kind of centre of activity and focus, which is a week. But you're right. This is this is an all year round thing, so it's great that you've got that website. And I'm just struck by the fact that when we did the menopause episode, one of the topics that came up there was about the fact that actually the issues that that a lot of Black women faced were actually issues that a lot of people from disadvantaged communities faced, but there's a disproportionate amount of Black women in those disadvantaged communities. And that, so when people start saying things like "Oh, it must be a genetic thing" about pregnancy and baby loss and things like that. No, it's not it's about, it's about the situations that we're living in. It's about the money that we have to buy good, nutritious food. It's about the care that we receive, because perceptions about us. And then about how if we're perceiving, if we say there's something wrong with my baby, whether people believe it or not, and the extent to which they believe us and take our word.

Alicia Burnett  

That's another thing and I'm gonna have to bring up systemic racism right there. Because when we say there's something wrong with my baby, something's not right. If you're saying that to somebody who is taught to view babies and women through a particular lens, a very Eurocentric, a very Eurocentric and basically very white lens, they are not necessarily going to recognise signs that your baby is unwell because they haven't been taught those things. And that's because the structures that they work in, the structures that they're educated within, weren't designed to be inclusive of individual, racial and ethnic differences. So if your baby is struggling to breathe, seriously struggling to breathe and the oxygen concentration in the blood is really, really poor, on a baby with very light complexion, you may see blueness around the mouth, but in a baby of my complexion, you won't particularly see that, you may see the bluish tinge inside the mouth, around the gums. But that's not taught. So that's where Black women not feeling listened to comes in. So, I'm telling you, something's wrong. I don't have the knowledge, but I know I'm a mum. I can feel it. I know something's wrong, but because you are viewing me in a particular way, you won't listen. And that is sometimes where the worst happens. I've seen it. I've heard people tell me, it's the truth. And I think a lot of people have a hard time accepting that because, I would like to think that nobody goes into healthcare with malicious intent, you go into it because she wants to help people, however, I don't think we're all very well equipped all the time to give the care that everybody needs.

Steph Edusei  

And you're absolutely right. I mean, there are so many very well respected, medical textbooks that are in in current production, that just focus on signs and symptoms in white people, and we know, I mean, there's a whole, there's a doctor doing a whole lot of work on dermatological conditions and what they look like on different colours of skin, because doctors just aren't trained to recognise that. 

Steph Edusei  

So, what can people expect from Black Baby Loss Awareness Week, what's going to be going on?

Alicia Burnett  

So, there's a lot going on, and it's just me

Steph Edusei  

I feel you; I know that one.

Alicia Burnett  

So. the main thing is a series of Instagram lives. So, running throughout the week, but I've also committed myself to in-person activities as well. And I've not told anybody this, you're the first person that's going to hear about it. So on Monday, the 15th of May, so you've got Sands, which is one of the large baby loss charities, and you've also got Tommy's which is the charity that I work with, they have come together to form the Joint Policy Unit, and together they generated a report called The Saving Babies Lives report. Basically, it's looking at all of the interventions, policies, guidelines, activities that have been put in place to save babies lives to reduce stillbirth rates to improve the care that women receive when they lose babies. They really critiqued and scrutinised all of these activities and they produced this report that basically says, is what we're doing working? Is this actually working? We've taken a good look, and these are the, these are our findings. So, they're launching this report in Parliament and they've asked me to go to Parliament to speak on my experience and to speak about Black Baby Loss Awareness Week. I haven't told anybody. You, when you want something to happen, you're like keep it close to your chest. So, you're the first person I'm telling. I'm really struggling to find a dress because I've never been to Parliament before and I just want I just want it to go well, because this is a huge thing for this, this little idea that I had in my head and I'm going to speak about it to MPs. That is, I'm really proud of that. But I'm even more proud of the people that have come to me and asked to help. What can we do? How can we get the word out there for you? And they've been really patient with me because I've got a one-year-old who's super, super active and chatty. And so, it's been hard coordinating everything when she has her naps that's when I'm scribbling away on Canva and in Word, but, yeah, so you can look up Instagram lives. I'm going to be live streaming when I'm at in-person events. I'm also going to get some professionals to record videos because everybody needs to know the different types of professional you can meet when you do experience baby loss. So yes, Instagram lives, live streaming and videos, and I'm going to be launching the website at some point in June or July.

Steph Edusei  

Alright, so that's the Instagrams will be on your, it's @blackbabylossawareness. 

Alicia Burnett  

Yes, on Instagram. 

Steph Edusei  

So, people can follow that and certainly with things like the, I mean well done on going to the Houses of Parliament. and you know I'll try and tag as many black female MPs and get them get them down if you let me know exactly when what time you're going to be on, I'll try and get as many as we can down there. We've got a local one here in Newcastle that I'm sure if she's available will get down there as well, so we'll try and get try to get people there to hear. But actually, interestingly I'm saying Black female, actually we just want MPs don't we? And it's probably as important that white men hear the message because actually, they're the ones that still hold the power. They're, you know, they're still the people who are the majority of the doctors. And interestingly, I don't know if it's changed much but they always used to be the Obstetricians and Gynecologists were always white men. I don't know if there's more women.

Alicia Burnett  

What I love what I absolutely love is when I'm working, when I was working on the on the frontline when I'd have a female obstetrician, particularly when they were a consultant because I know how hard that woman had worked to get to where she is. And I'm seeing more and more Black obstetricians, which is really, really, really delightful because they are more used to seeing X Y Z conditions in people that look like me. And they have more insight into what my home life might be like. When I was pregnant with my daughter. She wasn't an obstetrician, but she was a Black midwife, and she's a diabetes specialist midwife, and she handed me this information about the foods I should be eating, and I was like, "Oh great it's gonna be dried apricot and scones". But there was like, plantain and she was telling me, if it's a green plantain what the sugar content is, like, if it's a black really, really dark plantain what additional content is like yam, cornmeal porridge, all of this stuff. And I was like "Wow I feel so seen" and this is amazing.

Steph Edusei  

And that's what's needed, isn't it? Because it's like, I'm not suddenly going to start eating food that I haven't eaten for most of my life. Or even you know, I still want to be able to have elements of my, my, my cultural heritage reflected and what I'm doing even though I have to maybe modify things a little bit. So yeah, it's amazing, isn't it? I mean, with everything, you know, weight loss and everything, how all of a sudden it's like, oh, what you have to eat a white western diet. Okay, whatever. 

Alicia Burnett  

But you know what's interesting? When I ate my pilchards and my green banana, my blood sugar was amazing. It's when I was eating the very European hospital food that my blood sugar was crazy, ate my home food and I was fine. So interesting.

Steph Edusei  

It is indeed, so how can people get involved and help? If they you know, they listen to this, they want to support how can they help support you? 

Alicia Burnett  

So the first thing, which I hope will be easy to do is to make sure you follow the Black Baby Loss Awareness Instagram page, and I've also got my own Instagram page, that I share things on, which is @midwife_Alicia. So, follow those two pages, engage with the content and share the content. If you know somebody that's going through baby loss either now or if it was years ago, or if they're pregnant, and they have some concerns, please share that information with them. Because I want to reach my community. I want people that look like me that look like my auntie, my sister, my mum, my grandma to know that if you know somebody that is going through this experience, I know somewhere where you can find some information; you don't have to necessarily go through your GP or an external body, you can do it from your house because when you're going through and you're grieving, you don't necessarily want to go outside even. Even opening your phone can be quite a challenging thing, especially; when you're pregnant, you follow all of the pregnancy pages. You follow all of that stuff on social media. And when you lose your baby, you're bombarded with that stuff all the time. So, if it's just like a safe space that's separate from all of that potential triggering stuff. Just signpost people to the website BlackBabyLossSupport.com as well. That'd be really, really helpful.

Steph Edusei  

And I've just followed you now, because I hadn't before so there you are there's another couple of followers there. And then yeah, I think it is that thing, isn't it? It's the no matter how uncomfortable you feel, as somebody talking to somebody who's lost a child, just think what they've been through and push through that that discomfort. And I think sometimes just being there, isn't it, is enough. Just being there, just listening and not coming up with platitudes. Just being there, I think, makes a huge difference and allowing people to know they can talk to you. They can say whatever they want, you're not going to judge them. It's one of the big things with grieving is that there is no right or wrong way to grieve. 

Alicia Burnett  

Absolutely. 

Steph Edusei  

And grief can last a lifetime. So a lot of people, we hear a lot of people saying, oh well you know, people are saying well, once you've got that all of the firsts out so first birthday, first Christmas, first, first anniversary of the death all of that type of thing, it becomes easier and actually people are saying well actually sometimes it becomes a lot harder after that. 

Alicia Burnett  

People forget, you don't get the messages saying oh, this would have been his second birthday. You don't get those after a while. And I noticed that around his, the anniversary of his passing, being at work was hard, because like my brain would get really foggy and cloudy and I wouldn't wasn't able to, just wasn't able to cope with everyday things. And oh, one of the topics we'll be discussing during Black Baby Loss Awareness Week is how to discuss your loss at work and the support you should be expecting from your employer. It's to support women and parents, it’s not just women, it's the fathers that have to go back to work after loss as well. So, it's just apparently

Steph Edusei  

And often that is very quickly often, isn't it? 

Alicia Burnett  

Yeah. Like, like, you just change a tire and you've got to go back to work. It's not it's not an everyday mundane thing to go through. And so that, those sessions will be to support parents and also to support employers to let them know that actually you have a legal and a moral obligation to support your employees that are going through this life-changing and very traumatic event. Yeah, so I really struggled when going back to Uni and going back to work around those times of year. So, I really wanted to make sure that was included. 

Steph Edusei  

Great. Okay. Yeah, I'm just reminded of a story I heard of a man who his partner had had a miscarriage quite, quite late in the pregnancy, and obviously took some time off, but then had their employer saying, "Well, why do you need time off? You, it’s not you that's had the miscarriage". And it's kind of well, yeah, it is. Physically. No, but they've lost a child too. So yeah, just horrendous. So, as you said towards the beginning, this is not just about a week, people, unfortunately, lose babies all year round. Once the week, which is the week of the 15th of May, once that week's over, did you say your website's launching hopefully in June.

Alicia Burnett  

Hopefully June, July. I'm going to invite community leaders and people that head up Black led community organisations, so I want to invite them to launch the event. I really, I'm just telling you all of my plans because you make me feel very comfortable. I want to fundraise for the hospice that I took my son to. They went through it during COVID, I think they were very close to the on the brink of closing, so I would like to raise some funds for them. It would raise awareness of them that they exist and that if you have a child that has a life limiting condition and you need respite care, you can go there and if you do lose your child, you can have the option of taking them to hospice so you get that time together. I really wanted to take my boy home, and I would lie in bed at night wishing he was next to me. And I only got to do that after he passed. So, I want to raise awareness of that being an option. And they offer counseling as well. The grounds were beautiful. Especially, it was May when he passed it, it was summertime, and the flowers were beautiful, really tranquil. Yeah. So, it's beautiful

Steph Edusei  

Do you want to name them?

Alicia Burnett  

Haven house. There are about I think about there around four children's hospices in London, and nobody knows they exist unless you actually need them. And no, it's sad that people need to use them but actually everyone should know so they can signpost to them and support them because they are, they hold the community, that unseen community of parents that have children with life limiting conditions, the community of women and families that have experienced loss. They are an anchor of our community, and they deserve our support.

Steph Edusei  

And I mean, one of the things that I take great pride in is that because we do as part of our hospice care, we provide short breaks and respite for children as well. And that's a time for families, for parents to just have a bit of a break and actually maybe if they've got other children, spend some time focusing on those other children. And the best quote that sticks in my head is a mother who said the only time she ever gets a full night's sleep is when her child is with us, and you go that's, actually it's an honor to be able to, to give that to her. So yeah, so brilliant. And I mean, obviously you will continue to campaign all year round, the website's gonna go alive with all of that information and links for people. So, anybody that's listening to this, if in nine months’ time, you're talking to somebody who has, you know, had a loss of a child, that website will be there to signpost to. So, I think that's fantastic. 

Steph Edusei  

And you know, what you've done and the fact that you're doing it with a very young child as well, because for a lot of people doing that and a job would be enough but then you know, this is obviously a real passion of yours and just thank you so much because it's something that needs to be done. You'll be brilliant at the Houses of Parliament, I know you will, you'll just wow them all. But thank you so much for your time, Alicia, it's been lovely talking to you. And if I can be of any help in future, get in touch and let me know. 

Alicia Burnett  

Thank you so much, Steph, thank you for having me. 

Steph Edusei  

You're welcome.

Steph Edusei  

And people who are listening just remember to like and subscribe to make sure you can see future events and help others find it too. We have an upcoming event on the 15th of May actually, and that's going to be Black All Year - Antiracist Discussions, and that's a live event online. So, if you search for Black All Year on Eventbrite, you can book for free or you can actually get early access to the recording if you can't make it live. And if you are listening and you think I've got a topic that I'd love to cover, just email us on blackallyearuk@outlook.com. 

Steph Edusei  

So, thank you once again, Alicia. It's been lovely meeting you. I wish you all the best. All power to you and take care.