Podcast: Pregnancy after a loss in partnership with Tommy’s and Guest, Midwife Kate Marsh.

Pregnancy after a loss in partnership with Tommy’s and Guest, Midwife Kate Marsh.

Season 1, Episode 4

1 in 4 women experience miscarriage or pregnancy loss, so for a lot of us falling pregnant again can come with a lot of conflicting emotions. In this episode I’m joined by midwife Kate Marsh from the team at Tommy’s. Tommy’s are the UK Baby Loss Charity, supporting women through baby loss and researching miscarriage, preterm birth and still birth. We talk candidly about experiencing miscarriage, and approaching pregnancy after losing a baby.

Please access this episode with care, if you are currently pregnant, you may prefer to wait until after your baby is born until you listen.

If you need immediate mental health support or are concerned about your pregnancy in any way please contact your Midwife, GP, 111 NHS service or in an emergency phone 999.

You can contact the Tommy’s Pregnancy Support Line on 0800 0147 800 Mon-Fri 9-5pm.

For more information or support from Tommy’s visit https://www.tommys.org/

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TRANSCRIPT

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Hi everybody, welcome back to The Birth-ed podcast.

We have got a bit of a special episode today that we are making in partnership with the charity Tommy's.

I'm joined by Kate Marsh, who's the midwifery manager at Tommy's and the Tommy's Charity are the UK baby loss charity who fund research into miscarriage, stillbirth and premature birth and provide pregnancy and health information to parents.

So in this episode, we are gonna be looking kind of specifically at pregnancy and birth after a loss, kind of after a miscarriage type of experience for women.

And when I sort of first reached out to Tommy's and connected with Kate about recording this episode, ultimately this situation was somewhat hypothetical to me.

I knew that it was a kind of surprisingly common experience amongst women and therefore a really important conversation to have, but it wasn't something that had actually affected me personally when we kind of talked about making this episode.

And in a kind of strange and sad turn of events, in the relatively short period of time between organizing this episode and actually getting around to recording it, that actually totally changed for me.

Earlier this month, I actually lost a pregnancy myself having suffered with an ectopic pregnancy.

Actually, that's something that's kind of still currently resolving, but suddenly this episode has gone from a totally hypothetical situation to kind of really quite close to home for me.

So I really hope if you are listening to this and you are currently pregnant or perhaps considering becoming pregnant again, that we go a little way to answer some of the kind of questions that you might be wondering.

So Kate, welcome.

Thank you so much for joining me.

Thank you for having me.

It's great to be here with you on this podcast.

Lovely, thank you.

So I suppose a kind of good place to kick us off would be, how common is it, or how not common is it for a woman to have experienced a pregnancy loss of some kind?

Yeah, I mean, unfortunately, it is really common.

The most common sort of loss is around that early pregnancy loss, miscarriage and ectopic pregnancy, as you've just mentioned yourself.

We know that about one in four recognized pregnancies will end in loss.

But in reality, a lot of pregnancies aren't necessarily known about, and might not have done a pregnancy test, or might not necessarily have been recorded in any way.

So that's quite a conservative figure.

And then those babies who are born, sort of stillborn, about one in 200, roughly a little bit, in this country.

And then you have babies that are lost in the early few weeks as well, which is less common.

But they're very different types of losses.

But unfortunately, the chances are a lot of people will either know someone or be personally affected by the loss of a baby.

And that's when I sort of, knowing those statistics in our, the kind of social media internal things that we run at Birth-Ed across the kind of, across all the different social media channels.

There's about 40,000 women that we kind of connect with.

And when I kind of considered doing this episode, one in four, that's potentially 10,000 women that we communicate with kind of directly.

So it's, you know, it's really not an unusual situation to be in as a woman falling pregnant, having experienced that in some way.

And so why don't we talk about it more?

What, where does this kind of, I don't know, secrecy or shame or whatever, where does it come from?

Yeah, I think there's so much unknown about baby loss and pregnancy loss as well.

So there's so many questions that just go unanswered, unfortunately, and obviously that's the work that Tommy's does is trying to find those answers.

But I think if we focus a little bit on miscarriage and early pregnancy loss, it's really common for people not necessarily to tell people about pregnancy or be very open about their pregnancy in the first trimester or until they've had that first scan, really.

And that's a really personal decision.

Some people, that's completely the right decision for.

Others, they need that support and would like to talk about it.

But I think if people haven't spoken about it and then going through a loss, it's quite a difficult place to start that conversation with somebody.

And I think there's a little bit of, a lot of people don't really know how to have that conversation, essentially, and sort of how to react.

If someone tells you about their loss, it's sort of like, well, I want to say the right thing.

And sometimes people are mixed in their response and maybe not having the experience of being able to support somebody, so it can be quite daunting to have those conversations.

But I think there's a multitude of reasons.

You know, in some cultures, it's just, you know, it's not something that people necessarily have those conversations about.

Some people are quite isolated, maybe don't have people that they can talk to about, really.

So it is a personal choice, but I think there's also a lot around, a lot more needs to be done about why miscarriage and the loss of babies do happen, to actually be able to sort of talk about it and move things forward, really.

I think at the moment, it's very difficult to know why things happen, and it makes it really tricky.

And we'll touch on that a little bit more later, but I just wanted to highlight something you said there about, you know, women not really telling people that they're pregnant till this 12-week mark.

And I remember when we, we've got a three-year-old boy, and when we fell pregnant with him, I remember thinking, well, you're not allowed to tell anyone that you're pregnant till your 12 weeks.

And I had hyperemesis, which is kind of incredibly severe sort of morning sickness or pregnancy sickness.

And I remember sitting, I was sort of hooked up to a drip in hospital, on my own, in this bed, and just feeling like so, so desperately lonely, being like, oh, I can't even text anybody because nobody knows.

And it didn't even cross my mind to just, like, even very good friends.

I'm like, why didn't I just say it?

Why didn't I just say I'm pregnant?

And this is happening and it's really shit.

So this time around, we were in a very different situation and I've told everybody that I want to know.

And it's just opened up a whole level of support that wasn't there the first time around.

And it wasn't not there because people were unsupported.

It was there because people didn't know.

And I think if that is something that you ever go through as a mother, just knowing that it's not like, there's no law that says you can't tell people that you're 12 weeks pregnant.

If you feel like it's gonna help, then do it, it's your information to share.

It's not anybody else's.

And there is that.

If you're anybody and somebody tells you that they've experienced a miscarriage or a pregnancy loss of some kind, you're right, people don't necessarily know what to say.

So if anybody like that is listening, what do you think is the most kind of helpful response or helpful thing they can do?

Yeah, I think sometimes it's human nature to want to make everything better.

You want to kind of be really cut-puff, full-blood forward, look positive, you know.

And I think actually it's not necessarily about what you say, but it's about being there and listening, and everybody that does experience a loss will experience it differently.

And I don't think anyone can necessarily assume how someone is feeling or how they're reacting to, you know, what they're going through at that moment.

So I always suggest, you know, we get calls, or, you know, I talk to people like my friend or my daughter or, you know, someone in the family is going through a loss, you know, what can I do?

And I was like, actually, just be there for them and recognize what they're going through, recognize their loss.

You know, for some people, really well-meaningly, we'll say things like, really positive, or at least you can get pregnant, or, you know, don't worry, you can try again, which you absolutely know why people say that.

It is try to be really positive.

But sometimes you just sort of need to take a bit of a deep breath and actually just recognize what that person's going through.

And, you know, it's really rubbish, you know, that polite way of putting it.

But it is, and you do need time to grieve.

And from the moment that someone sees that positive test, you know, for most people, you're sort of imagining what your life's gonna be like, or, you know, your addition to your family, or how your life's gonna change, or what things are gonna be like.

So you are grieving no matter how early the loss, you're still grieving for that baby, you're still grieving for those thoughts and your perception of how your life is gonna be.

So, you know, it's important to have that grieving process, and to allow that person to have that really.

So just being kind of sensitive and going off that person's cues.

You know, if they're not quite ready to talk yet, that's fine, just let them know that you're there.

And then when they're ready, they can come and talk to you and have a cup of tea, have a bit of a cry, a bit of chocolate, and do what you need to do to kind of cope with what's happening.

And so if that's an experience that a woman has had, or a partner has had, what other kind of, as well as kind of friends and families and kind of that immediate support, what other kind of support is available to women?

Where can they turn if they're feeling these things and either they feel like they don't want necessarily to talk to friends and families, or they feel like they need something kind of a little bit more kind of professional level of help?

Yeah, exactly.

So there's lots of sort of fantastic resources, online resources.

Obviously, I'm going to start off with Tommy.

So we do have a pregnancy line here, Monday to Friday, 9 to 5.

And we have a midwife here.

We're all midwives, all practicing in some way within the NHS.

And we are very used to having conversations, unfortunately, but we are very used to having conversations about supporting those through pregnancy loss, whether that's yourself that's had a loss, or you know somebody, or you're trying to support somebody.

So do feel free to call us.

We've got a lot of online resources as well on our website at tommys.org, where you can find our number too, and our email address.

So, you know, we are around and we can talk to anyone.

It can be completely anonymous.

You don't have to give us any details.

And even if you're not sure what to say, you just want to have a cry, just pick up the phone and you know, we're there.

So, you know, please don't let that be any kind of barrier if you're thinking you need to disclose any of that information.

And aside from that, you know, there are lots of fantastic sort of online resources and social media, actually.

There's really positive networks out there.

We work and support a lot with someone called Jess that runs the Babyloss Hour on a Tuesday evening on Twitter as well, between eight and nine.

And that's really supportive too, so that's worth checking out.

And then, you know, of course, there are other great charities as well, like the Sands Miscarriage Association that have resources too.

So, there's lots of information out there.

And then, we always encourage, you know, I think for a lot of people, counselling is really, really positive.

So, a great place to start is your GP, just to check in with them.

So, they'll be the person that, hopefully, will know more about the local services.

And the early pregnancy unit as well will quite often either have groups or have contact information about counselling and talking therapies as well.

And it's really important to know that it's never too late as well.

You know, there's no time frame of when you need to access the support.

If you think, I'm not in a place to do it right now.

I just need to, you know, some people just like to have their own time to process everything, and it's not till several months down the line.

They're like, oh, actually, I think I need a bit of support, or they might find they're pregnant again, and then all those feelings come up again, which may be a little bit suppressed through sort of self-protection and reservation, really.

So it's never too late to get support.

There are lots of organizations out there, and we will definitely try and help you access services where we can as well.

We don't know everything, but we do have quite a lot of information in our hands that we can hopefully be able to support you too.

But, you know, it is sometimes quite a big step to ask for help.

But once you've done it, hopefully, you know, it's really positive and can help you sort of process and manage your feelings.

Yeah.

And so once, for a lot of women, they'll kind of get to a point where they feel that's kind of processed enough and they're kind of considering doing it all again, trying to get pregnant again.

For some people, that might be a kind of very quick step and part of their healing process.

And for other people, it might be kind of a really, really long time before they feel ready to kind of do that again.

So what are some of the kind of common struggles or emotions that come either in the process of deciding to try again or the kind of moment that women find out that they're pregnant for another time?

Yeah, a whole lot of anxiety, generally.

A lot comes with it.

Even the thought process of having sex again can be a massive deal and can be a lot of anxieties come with that.

So even the process of thinking about and getting pregnant in the first place can be quite a scary place to be.

We briefly touched on early pregnancy and sometimes how lonely it can potentially be as well if you haven't had those conversations with people that you're close to.

So a lot of anxieties do come with it.

And that's okay.

No one's ever going to judge you for feeling anxious.

But it is important to be able to get that support on board.

If you have a baby who is stillborn, then the care that you receive will be increased.

You will have extra scans.

You will have extra tests and screening as well.

At what point in pregnancy does a loss of a baby kind of alter the care?

At what stage is it considered to be a miscarriage and at what stage is it considered to be a stillbirth?

Yeah, so generally up to about 24 weeks, the loss of a baby is classified as a miscarriage.

And then after the 24 weeks, the baby is sort of a stillborn baby.

For a lot of people, completely understandably, if they lose a baby, particularly in the second trimester, so that's like after the 12 to 14 week mark up to 24, to say that the loss of your baby was a miscarriage can be quite difficult to hear.

It's sort of almost undermining a little of what's happened.

So that can be really, really difficult.

And unfortunately, it's kind of legal terms.

But if you lose your baby 18 weeks, and you want to say your baby was stillborn, you say that, you know.

It's your baby, it's your experience.

It's just kind of technical, medical terms, which can make it feel quite cold, really.

So care in the next pregnancy will change and adapt to what stage that you did lose your baby.

So sort of working backwards, you know, obviously if you did lose your baby after 24 weeks, then you will have more regular scans.

You'll be under consultant-led care, which means that you will see a consultant or a member of their obstetric team during the pregnancy.

But you also will have contact with the midwife as well.

So it's kind of more joint care.

And then it's quite similar.

If you did have a miscarriage or a loss of a baby in the second trimester, then again, you'd have more scans, depending really on if they knew what happened and why you lost your baby.

It will alter things a little bit, but more scanning and more tests.

With early pregnancy loss kind of in that first trimester, it's sometimes going to be quite difficult, particularly if you've had a couple of losses, early losses.

The care that you receive won't necessarily be any different, and that can be quite tricky.

You're kind of desperate for that early pregnancy scan, you know, waiting for your dating scan at the end of the first trimester.

It can feel like a lifetime.

But having said that, you know, things are different in each area, so it's always worth asking and seeing what care and support that you can get, and having a low threshold for getting support if you need it, really.

So it is a little bit different.

And so we kind of touched on it there a little bit, but how often do we know why it's happened?

Either a miscarriage or any kind of...

How often do we have...

How often do women receive an answer, and how often is it just, you know, we don't know?

I don't necessarily have sort of statistics for that, but on the NHS and kind of current guidance at the moment in this country generally for early pregnancy loss, you experience three before you kind of qualify, so to speak, to go to the recurrent miscarriage clinic, and when tests and investigations are generally carried out, they might throw something up or they might all come back clear, which can be incredibly frustrating, but, you know, there's also the positivity that actually that increases the chance of having a successful pregnancy, so it's a sort of double-edged sword, really.

And then again, with later losses, you may not necessarily get an answer.

Kind of the middle sort of mid-trimester losses generally tend to be something to do with the cervix, so then in the next pregnancy, they can put in stitches and scans to support that, or infection or something like that.

But again, it's not foregone that you will get an answer.

And then later on in pregnancy, for those babies that are stillborn, you generally will be offered the chance to kind of have a post-mortem, but again, unfortunately, sometimes they do come back without an answer, so that can be really, really difficult.

And Tommy's recently had a Tell Me Why campaign, and it's all about finding those answers, and it was quite a powerful video montage or clip, which is all these reasons that can go through a woman's head as to why things happen.

Was it because I was stressed?

It's always like the big thing that comes up.

Was it because I was stressed at work?

Was it because I ran for the train?

Was it because I ate a bit of this cheese or had a poor...

All these things that you just question and desperately try and hold on to.

And it, you know, women are so hard on themselves because the first thing you're going to do is blame yourself.

We know it won't have been your fault.

Because you actively want an answer.

Like, for my own situation, it was...

They give you this list of questions that they're asking to see if you fit any of the risk factors for this happening.

And when you don't fit any, they're like, oh, well, you know, it's just really bad luck, essentially.

And you're going, you know, I was on medication for hopefully not getting the hyperemesis again.

And then you're like, oh, my God, that was it.

And, you know, it wasn't because I wasn't, you know, that I know for my personal circumstances, that actually it happened long before I even started taking that medication.

The two things are completely unrelated, but your mind jumps because we, you know, just as humans, we like answers for stuff.

And somebody telling you, I don't know, I don't know, we don't, that doesn't sit well, because we want to be able to fix it, don't we?

We want to be able to go, right, well, next time, I'll make sure that I, whatever.

And when we don't have those answers, that can be one of the things that kind of makes it so tricky.

Yeah, it's really, really tricky.

And so what, do you mind talking a bit about the kind of the research that Tommy's does into this, or is this a kind of current ongoing project or a bit of work that you're doing?

Yeah, so obviously it's a charity.

We have various research centers that we fund around the country, and so we have a network of early miscarriage sort of centers, so sort of London, Birmingham, Warwick and Coventry.

And then we also have the Rainbow Clinic in Manchester that anyone can be, it doesn't matter where you live in the country, you can be referred to these centers.

But the Rainbow Clinic is a really amazing clinic, if I do say, and they will support anyone that is in pregnancy following a stillborn baby or loss of a baby in the early few weeks.

And then we have the Prematurity Clinic, which is the first one that was in London at St.

Thomas' as well.

So they can be accessed by anyone at all, and there's constant research that's going on in these centers all the time.

You can be part of trials, they're constantly sort of trialing.

You know, new ways of trying to improve sort of rates of baby loss.

And, you know, for example, one of the latest bits of research has come out is the use of progesterone in early pregnancy.

I think that's a lot of people research and hear a lot about progesterone in pregnancy.

And I know, you know, in other countries, it's quite a popular sort of form of medication to give in early pregnancy.

But they found that if you have experienced a miscarriage and then in your next pregnancy, if you're having spotting or bleeding, then progesterone can be really helpful.

So it's just getting that research out there and, you know, being able to empower women to be able to go to their GP who may not have heard of it, or go to their doctors and say, look, this is the research.

You know, and it can take a long time for research to get into guidelines.

You know, they say it takes about 10 years, which is madness, but it is such a long time.

So it's actually, Tommy's are doing a lot of work about trying to shorten that and get research to frontline care as quick as possible.

And, you know, our new centre is just opened, which is just about that, about disseminating research and trying to get this research really into care as quick as possible to be able to benefit families and everyone, so there's a lot going on.

And you see that across maternity care, that seeing, you can see it, you can read the research, but it isn't the care that is kind of currently being offered.

If women are interested in reading about that or they kind of want to be able to access that information, is that available through Tommy's?

Yeah, absolutely.

So everything is on our website, so it's www.tommys.org.

Go on there and there's lots of summaries of the research that's going on.

If you're interested in being referred to a centre or want to find out more, there's contact details on there as well, and your GP can make the referral.

It doesn't matter where you live in the country, you can access any of the centres really.

And if you've got any other further questions, then just call one of the Tommy's Midwives that's on during the week as well, and we'd be more than happy to support you too.

Great.

So moving on kind of ever so slightly now, thinking about the birth itself, how kind of previous pregnancy loss or loss of a baby affects that probably depends a lot on at what stage a woman and a family lost their baby to begin with in terms of how it's going to affect her kind of emotionally and also affect the kind of the care that she receives.

But I suppose particularly with kind of like raising, you know, rising induction rates and things like that, the chat about losing a baby is kind of, it suddenly rears its head again, I suppose, in the kind of later stages of pregnancy.

And so that can be another kind of trigger for anxiety for women.

And so do you have any kind of suggestions of what she can do to maintain a kind of sense of, I don't know...

Sense of everything.

Yeah, sense of everything.

Just kind of getting herself to a place where she doesn't feel totally on edge in those kind of final few weeks of pregnancy and for the birth itself.

Yeah, I think it's important to start thinking about that quite early on in pregnancy when you do feel ready.

Now, for those who have lost a baby later on in pregnancy, sometimes thinking about the end can just be a little bit too much.

So if you find that you're like, I can't think about that now, don't worry about it, it's okay.

But there will be an opportunity to be able to talk through a kind of birth plan and a plan with your obstetric team, with your midwife.

A lot of units also have a bereavement midwife as well that may support rainbow pregnancies or pregnancy afterloss.

So there will be someone in your maternity unit that you can sit down and have a chat about what your thoughts are about coming up to labour and birth and how you would like things to happen.

Generally, it's a general rule.

If you've had a baby that was stillborn, then they kind of suggest to not go too far over your due date.

But it's really important to know that you are the most important person in the care when it comes to decisions.

And health professionals are there to advise and give you information, talk about evidence and trust policies, etc.

Every decision should be made with you, not for you.

So it's really important that you have the opportunity to be able to sit down, talk through the options, the reason for the options, and make the decision that is right for you.

And it's also okay to change your mind, you know, unless it's right at the end.

But if you decide that you want a caesarean section, and then on the morning you're thinking, actually I don't want to do this, I'd rather go naturally, then that's okay.

Same as, you know, if you decide to decline a section and then you want to go for it, you know, keep having those conversations and discussions with everybody.

So don't feel like once the decision is made, then that's it.

But it is important to be able to have a really informed conversation about any risks, any benefits.

Obviously it will depend on what happened in previous pregnancies and how this pregnancy is going as well.

So it is very fluid.

They will suggest as to what they think is, you know, a good option, but it doesn't mean you feel that you have to be railroaded into that really.

So do give yourself time to have those conversations as well.

And so I suppose finally the last thing to talk about would be, you know, life after with your rainbow baby.

So you are home, you are raising your child after having lost a baby or a child that's kind of always there in your heart and in your head.

And that has got to be, you know, I'm not in that situation yet, but that has got to be like a difficult and a weird kind of experience thing.

You know, you've always got that kind of what if there.

Yeah, I think, you know, losing a baby is not going to leave you.

It's not going to, you know, be something that you're going to forget.

It's a life-changing event, you know, no matter what stage you lost your baby or what stage of the pregnancy.

And I think there is an element of, you know, if you have your rainbow baby and you have your baby and hopefully everything has gone well and you're back home, you know, there's, again, it's that kind of perception that you should be absolutely ecstatic and on top of the world and everything's fantastic, which for some people it is, and that is just brilliant.

But, like you're saying, there is an element of actually, this is still a really difficult time of, you know, I do have a baby, but I also have a baby that's not here with me.

And kind of explaining to, you know, the baby when they're older, that they did have a sibling, or, you know, what may have happened if it's relevant and if that's what you want to do.

But we talk a lot with people about remembering their baby and ways that you can do that.

And it's so personal, you can do anything that you want to do.

But, you know, some people might light a candle on various milestones or anniversaries.

Some people will like to create a little memory box.

Some people will have photos, hospital tags, you know, depending on how old the baby was.

And so planting a tree, you know, anything that you feel that you want to do to remember that baby, you know, is your way of grieving.

And that's an ongoing process for a lot of people.

And like I said, it's not necessarily something you get over, you know.

In time, hopefully, you get the support and you're able to cope and manage your feelings and sort of process things in your own way.

But it is very personal.

But I think for those people that have lost a baby and have their rainbow baby, you know, don't feel guilty that you're still thinking about your other baby.

And on the other hand, there are some people that are still working towards trying to find their rainbow.

And you know, it's not quite happening for them as well.

So, you know, that's really tough and, you know, seeing people around who are pregnant, you know, things like TV adverts, you know, everything's on the internet, these things just track you and follow you around, don't they?

So, you know, that's really tricky as well.

And I think it's also really important just to mention just at the end as well, we haven't really spoken about kind of partners and fathers and things like that.

And I think, you know, it affects them, you know, too.

And sometimes having those conversations with each other, if you are in a relationship or, you know, you are together, is actually having an understanding of how the other person is feeling.

Sometimes you can end up being really snappy with each other.

And it can be such a different experience for two people that have essentially gone through the same event.

You can experience it so differently and it can affect you both in such different ways and it can come out in such different ways.

But it is something that happens to both of you.

If you are with a partner, it is something that happens to both of you.

And that is important to remember.

And so Tommy's can support if partners want to contact them.

Oh yeah, we talk to partners, potential grandparents, you know, anyone that's affected by the loss of a baby or going through affected, you know, supporting someone through pregnancy.

It's okay to not always be strong all the time and say, actually, I'm really scared as to, you know, my partner's pregnant again, but I'm terrified as well.

But I'm trying to be strong for them.

And sometimes you actually just need to tell each other, actually, I'm both terrified.

And, you know, just support each other and give each other a big hug.

So yeah, it can be tough.

So I suppose to kind of wrap us up, if people are, you know, in any of these situations that we've kind of talked about, can you just recap how people can get in touch with Tommy's if they kind of want that support?

Yeah, of course.

So our pregnancy line is open Monday to Friday, 9 to 5.

And we have a midwife on every day.

And you can call us, you can email us, you can contact us via our Facebook page.

I'll tell you a little secret.

Our Instagram page is launching next week as well.

It is out there, but we're just building up at the moment, so you don't get too excited.

But next week, that's launching as well.

So for general support and inquiries, you can contact us via any of those channels.

We also do have a parenting afterloss Facebook group as well, which you can find via our Facebook pages too.

But everything's on our website, so that's www.tommys.org, and you'll find everything that you need on there.

Well, thank you so much for joining me.

Thanks, Kate.

It's been great.

Thank you so much for listening to this week's episode.

I hope you enjoyed it.

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