Episode #3 Infertility, Edward’s Syndrome, Mental Health and Reaching the End of the Road with Philippa Davies

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If you’re struggling to get pregnant or you’ve lost a child, you dream of the day you’ll bring a living baby home. Whatever we go through, we cling to that hope. But what happens when there is no more hope? When you reach the end of the road without a living child in your arms?

Philippa’s story is one of the most heartbreaking I’ve come across. But it’s a tale that needs to be told, because not every story has a happy ending.


Philippa Davies is the author of Dancing in the Wings, a play based on Philippa’s experience of infertility and baby loss. Dancing in the Wings is showing across theatres in North Wales and Cheshire during February and March 2020.

In the interview, we talk about:

  • Undiagnosed polycystic ovary syndrome and struggles with getting NHS support for fertility treatment. (7:25)
  • Philippa’s daughter, Sam, who was diagnosed with Edward’s syndrome. How Philippa chose to make the most of her pregnancy and the story of Sam’s stillbirth in January 2012. (11:55)
  • Deciding to try again and IVF round 2. (30:57)
  • Falling pregnant naturally, writing A Cookie for Christmas and losing another baby. (34:04)
  • Philippa’s struggle with grief, PTSD, depression. How she searched for support and finally stumbled across Hope House. (37:11)
  • Reaching the end of the road and feeling more hole than human. (46:30)
  • How she came to write Dancing in the Wings. (53:28)

We talk about grief and I mention the sculpture, Melancoli, which can be found in Geneva, Switzerland.

You can connect with Philippa on Twitter @PhilippaWriter.

Dancing in the Wings is being performed at the following theatres:

Theatr Clwyd, Mold: 27th-29th February 2020. Tickets: www.theatreclwyd.com or 01352 701521

Tŷ Pawb, Wrexham: 6th-7th March 2020. Tickets: www.typawb.wales/or 01978 292144

Galeri Caernarfon: 13th March 2020. Tickets: www.galericaernarfon.com or 01286 685222

The Forum Studio Theatre, Chester: 20th-21st March 2020. Tickets: www.chestertheatre.co.uk or 01244 341296

If you enjoy the podcast, I’d really appreciate it if you could leave a review on your podcast app. You can connect with me on Instagram (https://www.instagram.com/footprintsonourhearts/) and Twitter (https://twitter.com/skyesfootprints) or email alison@footprintsonourhearts.com.


Please note, timings below are referenced from the start of the interview segment of the postcast, not the start of the podcast itself.

Alison Ingleby 0:01
Today I’m joined on the podcast by Philippa, the author of Dancing in the Wings, a very special play based on Philippa’s experience of infertility and baby loss. Welcome to the podcast, Philippa, thanks for coming on.

Philippa Davies 0:13
Thank you. Thank you very much for having me. It’s great to be here.

Alison Ingleby 0:18
So we’ve got a lot that I’d like to talk about today. And because you have some quite unique experiences, I think compared to many other guests, but before we get on to talking about your daughter, Sam and and writing and all that kind of stuff, let’s go right back to the beginning. So when did you first realise that perhaps your journey to motherhood wasn’t going to be as smooth as you would hope?

Philippa Davies 0:46
it’s probably going back quite a long time ago. Going back, I mean, I’m I’m 48 now. So going back 18 years ago, when I just hit 30, I had a problem with … I was rushed into hospital with what I thought was food poisoning, and turned out to be a massive cyst on my left ovary that had ruptured and ruptured the ovary as well. And turns out to be polycystic ovarian syndrome, but hadn’t been detected, despite a number of issues through my teenage years and 20s, nobody had picked up on it. So it wasn’t until this emergency operation, and at that point, they told me I could lose one or both ovaries. And yeah, it was really terrifying. But they decided to try and reconstruct the ovary, which didn’t work terribly well. But I kind of persisted and then it took me a while to find, I suppose, a relationship that was suitable so it was a little bit later in my life. So I was 36 by the time I met Sam’s dad, and by this time the reconstructed ovary was beginning to tell me that it was having problems. And I was in and out of hospital for six months just after we met before, they had to remove it, and also discovered cysts on my right ovary, as well. But at that stage, they said to me, well, we need you to try naturally, for a few years, 18 months to two years before we can give you any assistance. So it was difficult.

Alison Ingleby 2:41
Okay, so so you’re left at 36 which isn’t old, but you may start feeling like there is a clock there.

Philippa Davies 2:53
Absolutely. Definitely.

Alison Ingleby 2:54
And you’ve got one ovary removed and you’ve got one left with problems. So did it, I mean, did anyone talk to you about. I don’t know, egg harvesting or anything along those lines?

Philippa Davies
What they said is at that point, they said, well, we’ve done tests, and it does work sometimes. So there is a chance that you can conceive naturally. And we would prefer it if you tried naturally, for a while before we look at anything else. So that’s what we did. And 18 months later, still nothing. And so I’ve gone back to the doctors and they said, “Look, we’re really sorry, but at this stage you’re now too old for assistance through the NHS.”

Alison Ingleby
You’re joking. Oh my goodness.

Philippa Davies 3:45
No. So, at that stage, it was, well, what do I do now? I mean, they did lots of tests and said yes, you still have cysts on your right ovary. Yes, you’re ovulating sometimes. But yeah, it wasn’t working. So we then … it was only two years later, no, it was later than that. Three, three and a half years later before we could even contemplate IVF because we didn’t have the funds. We didn’t have the money to do it. And it was only after, sorry.

Alison Ingleby 3:52
No, no, I was going to say and you obviously don’t have to share this information if you don’t want to because it’s very private. I haven’t been through fertility treatment but I do know people who have and I am aware that it is a very expensive thing to go through. Are you able to give us maybe some idea of what the cost is for people who maybe don’t realise what the the financial impact of that is?

Philippa Davies
It was huge that first round of IVF in the end with all the added bits they decided we needed, it came to nearly 4000 pounds for the first round. And that was UK treatment. Now, we were delighted at the fact that worked. It was amazing, you know that the fact that I became pregnant first time was was really, really exciting. And it was fantastic. So we were over the moon with that, at that stage.

Alison Ingleby
And then what happened next?

Philippa Davies 5:27
Well, we went along for we had an early scan, and that was all good and all fine. And then we went along for the 12 week scan. And they said, Yep, baby’s going really well. Everything’s good. However, there is a slightly increased nuchal translucency anti measurement at the back of the baby’s neck. Now, this could be nothing, it could be something, we don’t know at this stage. You know, babies with a hole in their heart can have this and that’s not a problem. So that’s fine. But we’d like you to come back. We’d like to have some blood tests and then we’d like you to come back. So we did that we went down the blood test route. And there were … Some of it was showing up absolutely normal and other bits of it wasn’t quite normal. And then when we came back a couple of weeks later and the consultant scanned the baby and said, “Well, actually, the measurement’s reduced, you know, we suspect it could be something and nothing, really. So just relax, carry on. It’ll be you know, let’s see what happens there’s nothing else to worry about at the moment.” So by this point, you’re already … you do everything you can to stay relaxed and and happy and cheerful. But there’s always that fear, because we’d actually lost a baby a month before we were due to go for IVF – a very early pregnancy at that stage. So I already knew there was a possibility of these things happening. But I thought, No, it’s fine, you know, they’re telling us i’s okay, let’s carry on. So that’s what we did. I actually gave up work at that point. And the reason I gave up work was because I thought, I’ve got one crack at this, I’ve got one chance at it. And I’m going to, I’m going to enjoy the pregnancy and I’m going to make the most of it. And, you know, if there are any stresses then I don’t want to focus on work. So that’s what I did and lived off some savings that I had. And then we went for the 20 week scan. And that was when things went horribly wrong. That was when we discovered that our baby was a girl, that she was Sam and she had brain cysts and she had two and a half chambers instead of four to her heart, and she had twisted limb on on her arm. And yeah, it was the worst experience probably of my life. And it was hard because the consultant at that stage said to us in the meeting afterwards, “you know, I actually don’t believe she’s compatible with life, but we need to do some tests.” And the blood test showed that she had Edwards syndrome

Alison Ingleby 8:39
And were all the factors which they found on the scan, was that because of the Edwards syndrome? Could you maybe explain a bit about what Edwards is?

Philippa Davies
Yeah. So, Edwards is is trisomy 18. And it’s basically, speaking as a biologist, with most of your genes, you have a duplicate copy of each of your your chromosomes that make up your genes. But with this, it had a triplicate, so a number of the chromosomes were triplicate, rather than duplicate. Downs syndrome is the same. So that has a triplicate and a number of different chromosomes. The unfortunate fact with Edwards syndrome is that the chromosomes that are affected are absolutely necessary for life. And so, you know, you have a baby who usually usually doesn’t make that stage of pregnancy. Or the third trimester, certainly generally doesn’t make birth and if they do, they will only live hours, possibly days if you have full blown Edward syndrome. There is different type where they children can live for slightly longer, but Sam had full blown Edward’s syndrome.

Alison Ingleby 10:09
Yeah, I mean, I can’t imagine … you must have been in so much shock and grief and just shock, I guess. almost unable to take this in. What options were you given or what what did they tell you at that stage? How did they treat you?

Philippa Davies 10:29
I mean, they have to be very professional. So they have to, I suppose, deal with it in a way that is black and white. Which is hard when it’s your child. But, yeah, I mean, they gave us the option to terminate. And that was something that for me, personally, and I know everybody’s very different on it – it has to be the most difficult decision that anyone ever has to make in their entire life ever. And I couldn’t make that decision, I couldn’t for me personally. I decided that I would wait until she was ready. And I, the weird thing was within the within the hours after and a couple of days until we got the blood test results, I was so angry and so upset. But once they told me, I almost decided no, you’re a mum. And you have that responsibility to your baby. And you can’t just sit here for however long she’s got feeling sorry for yourself. You have to look after her. That’s what you’re her mom. So we went through what time she had left. She got to 34 weeks in the end. But between 20 weeks and 34 weeks, she went to Michelin star restaurants. She went swimming. She stayed in hotels. She went fishing, she had Christmas. she had Christmas presents and trees. Everything that you would do for a child because I thought if I’m relaxed, then no matter what her health is, she’s going be more relaxed, even at that stage. So that’s what I did. That’s what we did.

Alison Ingleby 12:16
That’s, that’s an amazing approach to take, because it would be so easy just to kind of give up and spend every day crying and you know, because that grief is still going to be there isn’t there. There’s the grief because of the knowledge that she won’t survive and the grief that you’re having to carry her and go through this and I guess it’s extending that process. Did that help you come to terms with or prepare for what was going to happen a bit more?

Philippa Davies 12:50
I don’t think I prepared myself for it at all. I think I was very optimistic. I really hoped that maybe possibly she’d be a baby that I will meet, you know, I suppose that was my hope. And I’d come across another family in Cheshire who just gone through the same thing, but their baby had gone through birth and at this stage was days old. And I suppose that gave me a little bit of hope that maybe, just maybe, I would get to meet her. And I thought, No, I can’t I have to do this. And I really did. I was, I was really strong with myself, I suppose. I gave myself the rule that whilst you are with her, and she is with you, you are a mum, and you are going to do everything possible to keep her happy. And that’s what I did. And that that was the only way I could approach it. For me, as a mum and for her as my daughter.

Alison Ingleby 13:54
That was incredibly brave of you.

Philippa Davies 14:01
I guess it was just my way of coping really.

Alison Ingleby 14:06
So yyou got through Christmas. Can you tell us then what happened around that 32 week point?

Philippa Davies 14:12
Yeah. So it was the 16th of January. And I was going for – I was having midwife appointments every 10 days so that we could for heartbeat. And she carried on growing, this was thing, she was the liveliest baby in the world. She just constantly danced from from morning till night, and she constantly grew, which was miraculous, really.

Alison Ingleby 14:43
Did she keep you awake at night?

Philippa Davies 14:44
Oh, yeah. Yeah, she kept me awake. She’d wake me up in the morning. It was the best feeling in the world. It was amazing that every time we saw the midwife, she said, “she’s still growing”. She was growing and she’s growing to her gestational age, which was amazing for a baby with her disability. And so the 16th of January, I excitedly went along for my midwife appointment. And it was, yeah, I never expected it. But I think the worst thing was, I went into the doctors and I sat in the waiting room. And I was approached by two ladies who were selling… Because I lived in Wales, it was about encouraging young children to learn Welsh. And so they wanted to sign parents up at a very early stage to sign them up to learn Welsh, and they came and sat next to me and they said, “would you like to do this?” How do you say to somebody that your baby’s going to die? And I said, “Look, I don’t think it’s something that I want to do right now”. And they said, “well come on, come on, you know, we can do this”. In the end, I had to say it, because they wouldn’t listen to what I was saying. So I actually had to say I’m going to lose my baby. But I think what they actually thought was something along the lines of social services will take my baby. That was how it was, which was just horrific. And I couldn’t say any more, there were other pregnant moms in in the waiting room. So I then went in for my scan. And I was always desperate to hear her. And anyway, the midwife couldn’t find the heartbeat and she said, “It’s okay. It’s okay. Some babies just lazy. Let’s wake her up. I’ll give you a hot sweet cup of tea. It’s an old fashioned way of waking them up.” So we did that, and I didn’t, I really didn’t think there was anything wrong. And I think that was probably me blocking it out. And so she came back and couldn’t find a heartbeat. So I then had to drive myself to hospital because I couldn’t get hold of my partner at the time. So I had to drive myself to hospital to be told that yes, her heart hadtopped. And yeah, I mean, all I could say was I’m not ready. I’m not ready for her to go. I can’t, you know, and I went at the end of it, I just went home. They said, well, we need to book you in to deliver her, and I said “no, I can’t. I can’t right now.” Can’t. She’s still with me right now. So I drove home and I didn’t want to tell anybody, because I thought assoon as I tell people, I’m going to have to accept that she’s gone. And I couldn’t do that.

Alison Ingleby 17:53
I had you told your partner at this point?

Philippa Davies 17:57
No because I couldn’t get hold of him. So it wasn’t until I got home that I was able to get hold of him. And obviously, he was absolutely devastated. But yeah, I didn’t want to tell my family or anybody else because then I’d have to accept it. And I couldn’t. I wasn’t ready to do that. Then they found out anyway, and so I had to go through the process. And so it was it was a week before I went into hospital and delivered. And through that week, I was terrified. I, I begged the doctor to do a caesarean, because I couldn’t cope. I’d wanted to meet her alive. I didn’t know who I was going to meet like this. So anyway, they said, “Well, we can’t do that for health reasons. We can’t give you a cesearean, we can’t knock you out. So you’re going to have to go through it, we’ll have to induce you, you will have to deliver just like normal birth and you have to go through it.” And that was that was terrifying. That was, yeah, one of the scariest things ever. But we went through it, it took 12 hours of inducing. And there was part of me that didn’t want to go through it because I didn’t want to lose the pregnancy. I didn’t want to lose the bump. I didn’t want to lose her. I didn’t want to not be a pregnant mum anymore. And then then I was scared of seeing her because I didn’t know who I was going to see or what I was going to see. And then the minute I I gave birth to her, because that’s the only way I can look at it, the minute I gave birth to her, she wasn’t going anywhere. I wasn’t letting her go. They weren’t going to take her away and I spent the best 16 hours of my life. The proudest moment of my life and the best 16 hours of my life.

Alison Ingleby 20:18
And did those feelings of, I guess, fear around meeting her and perhaps maybe what she would look like, what she would be like, did they stick with you? Did those go after the birth?

Philippa Davies 20:35
The instant, the second I gave birth, they were not gonna take her away. They were gone. The fear was gone, because that was my little girl. That was my baby. And it didn’t matter that she wasn’t breathing. It didn’t matter that her heart wasn’t beating. That was my little girl just like anybody else giving birth to a baby who is breathing with a heartbeat. Yeah, I couldn’t have been prouder of her or prouder of myself at that point.

Alison Ingleby 21:11
And did the hospital support you in terms of making memories or doing anything like that with her?

Philippa Davies 21:17
No, I did it myself. I’d already done it because between 20 weeks and 34 weeks I’d already … I’d never knitted in my life, I was better at digging holes in gardens and changing engines than I was knitting, but I knitted her a blanket and I just, I created the memories myself. I’d already collected everything for her by the time she arrived, and so I’d done it myself. They took family photos, they took photos of us and yeah, they are the most precious photos and pictures that I have and they are everywhere with me. They’re on my phone. They are at home. They are something that a lot of people are frightened of. And I have to be very careful but yeah, they go everywhere with me. So that’s basically what the hospital did. And we were able to have a registration form for her and I kept the measuring tape that they measured her with. She weighed a pound and she measured a foot in length, and she had big feet and perfect little fingers. You know, I have all those things in the bag next to my bed along with her ashes, because I couldn’t let them go either.

Alison Ingleby 21:58
Yeah, and it’s such an impossible decision to make, isn’t it? You know this decision you’ve got to make – do you bury your child? Do you cremate them? What do you do with this baby who you were dreaming, hoping that you would be bringing home forever?

Philippa Davies 23:03
It was hard because in the hospital they said to me “well you have a choice ,you can either sort your own funeral out or we have…” Urgh, it made me so angry. “We have kind of a multiple cremation where you …” can just kind of, you know … Yeah, I can’t go into that really, but I couldn’t cope with that. So I was incredibly lucky. I said that we will sort this out. And I found an amazing Undertaker who was very, very old traditional guy. And he was amazing and he refused to charge us at all. Yeah, and really, Welsh-speaking, very traditional chap, not what you would expect in terms of having that level of empathy. But I mean, he also, he took her when we left hospital and we were allowed to go and see her before the funeral. So whenever we wanted, I could go down there. Yeah, so I was lucky with that. Well, as lucky as … I have to count the positive things, you know, because you’ve got to, so, yeah, so that was that was my beautiful baby Sam.

Alison Ingleby 24:32
Thank you so much for sharing that story. So this was in 2012?

Philippa Davies 24:40

Alison Ingleby 24:45
How did you feel after Sam about trying again for another baby?

Philippa Davies 24:53
I desperately wanted to be a mum. I’ve always wanted to be a mum and never thought I wouldn’t be ever, even though my career was my focus and I was quite academic and everything else, I was never not going to be a mum. So the issue then came down to how do we afford more IVF? I thought we’ll go back to the doctor, because come on, you know, I’ve just been through this, we paid for the first round. So it was probably six months, maybe nine months after Sam, I went back to the doctor. And they knew obviously because they’d supported me through this. And I said, “Well, we can’t afford it you know, I’ve spent all my savings taking time off with Sam and I paid for the IVF. And you know, is there any chance we can get support?” And they said, “well the age limit has now gone up for supporting you with IVF.” And I said, “Well, that’s amazing. That’s brilliant.” Then they added, “But If you’ve never had IVF before.”

Alison Ingleby 26:06
I can’t believe how you’ve just been caught in between these different things. Like, it’s the worst … It’s like the perfect storm of infertility support disaster. That’s not even a sentence but you know what I mean.

Philippa Davies 26:23
Yeah, that’s how it felt it, it was like the worst, tragic comedy you could ever imagine.

Alison Ingleby 26:31
And they couldn’t find any way of making an exception for you?

Philippa Davies 26:35
No. So, what happened was, we had to wait another two years. And in the end, I had to borrow the money from my mum’s credit card. And, yeah, we went again, and by this time, IVF costs have gone up again. So this time, it was nearly £5000, I think because they decided they wanted to add more treatment into it, just in case. And it failed. So they only managed to retrieve one egg and yeah, it failed. So at that point, that was almost as bad as losing a child. And I wasn’t quite sure how I was going to cope anymore. My partner got me a young dog, Ernie, who’s with me now. The problem is that, you remember, I’d already had a baby, and I was a mum anyway. I had nothing. I had absolutely nothing to love. So the strange thing was that three months later, I fell pregnant naturally.

Alison Ingleby 28:04

Philippa Davies 28:05
Yeah. Which was incredibly unexpected. It was a shock, and the best thing ever. But during those three months, I was trying to come to terms with what had happened, Sam and another IVF. And I’d been doing a lot of writing. And I’d been writing books for Sam. And I’d been writing children’s fiction and it was my way of being a mum, I guess. And so when I became pregnant with baby three, that was the best thing in the world, and all of a sudden I felt amazing, absolutely amazing. All the fear that I had, because I’ve developed quite a phobia of babies and pregnant women, and my mental health hadn’t been good – I developed PTSD and depression and anxiety. So my writing had been my way of coping with that and motherhood. And so this baby was a miracle baby. This baby was our miracle rainbow baby. And Sam’s book, “Cookie for Christmas”, which is it’s actually on Amazon. But I decided to put it on Amazon when I became pregnant with baby three because I thought, I don’t want Sam to feel left out. So that was my way of saying it’s okay, you’re still there. And I had an early scam with baby three and that was fine, heart heartbeat was all there. And I was so happy with life. And so made a decision, put Sam’s book on Amazon and I thought that’s great. They you go, we’re fine. We’ve had the early scan. Nothing can go wrong this time. Sam, you’re not forgotten. We’ve got your book on there as well.

Then two days later, I lost that baby. And that was … that experience I can’t go into in depth because I can’t cope with it. Other than to say, when they found out that I was losing this baby too, they said, right, you don’t have to go through the same. This baby was 10 weeks. You don’t have to go through the same. We’ll get you into hospital and we will put you under general anaesthetic and you don’t have to go through it. There were problems with the processes within the hospital that meant that that didn’t happen, and I ended up bleeding out across the ward. So that was … my PTSD at that point was, yeah, was pretty uncontrollable. Yeah, and I can’t really talk about that one anymore. But yeah, that that was horrific. And up to this point I’d also been begging for support from kind of counsellors…

Alison Ingleby 31:18
Were you offered much?

Philippa Davies 31:20
Well, we were offered some support through the hospital when we first loss Sam, but it was very early days to be fair, and the style of counselling was very much “you talk we’ll listen”. At that early stage, you don’t feel like talking. What do you say, you know? So we decided that wasn’t for us. So I then went … I was offered lots and lots of antidepressants, turned them down, and the reason I turned them down is because I have quite a low drug tolerance. So for me personally, I didn’t want to end up in a situation where I was turned into a zombie. And that’s how it felt to me at that point. Antidepressants absolutely have their place for some people, but for me it wasn’t there. My thoughts were always well, you know, if I become addicted to antidepressants, then that’s just going to add to my problems. And then when I finally get off them, Sam’s not there anyway, you know that it’s not going to change anything.

Alison Ingleby 32:37
And I feel like also … and I think maybe it is better now and I don’t know what it was like then, but grief and depression are different things. And so much of what you must have be going through was grief and obviously that compounded other issues. But you know, you’ve lost three children in really traumatic circumstances. And so as well as the PTSD, you’ve got the grief. And as you say, I think there are different mental health interventions and different people go through different journeys, both in terms of grief, but also mental health and different things are appropriate at different times. We can’t just shove you into this thing and say “this is you’re going to be counselled now, this is what you’re going to have. And this is going to work for you” because that, you know, may not have been the right thing for you at that time. Maybe a few months down the line, it might have worked, but not right then.

Philippa Davies 33:35
So that was the counselling experience. And then the drugs, which I refused, and then I was then referred to a GP counsellor. I was told I could have six weeks counselling with the GP counsellor and I met him and he was the loveliest guy in the world, absolutely lovely. But his words to me, by the second time and a handful leaflets, his words to me were, “I’m really sorry. But you know you have genuine problems and I feel a bit like a chocolate teapot working with you.” Now the problem is, when you already feel like a failure, and a freak, which is how I perceived myself, somebody who you hope you can look up to to support you telling you they feel like a chocolate teapot is a little bit like …

Alison Ingleby 34:28
It’s not really helping you, is it?

Philippa Davies 34:30
No. And then I after that things got worse and I was referred to a psychiatric nurse through my mum’s GP. A young guy again, very pleasant, went into his office with his pictures of babies on the desk. And he sat there with his head in his hands after I told him and said, “I’m really sorry, but I’m out of my depth with you. So I think we need to refer you on. Or you could go down the route of getting your own kind of private counselling.” How on earth am I going to afford that? My brother actually paid for a session with me with a private counsellor, but again, very generic. And, you know, lighting candles for me wasn’t going to help.

Alison Ingleby 35:25
So this guy, had he looked at your file? Did he know your background before you went in?

Philippa Davies 35:32
Yeah, he knew a little bit about it. I mean, it was through my mum’s GP, so they didn’t have all my notes, but he knew a bit and I told him because he asked me and yeah, it was just like, “I’m sorry, but I’m out of my depth”. And that was a psychiatric nurse.

Alison Ingleby 35:49
Oh, my goodness. Yeah, way to make you feel worse.

Philippa Davies 35:54
So it was only after I’d lost baby three that I think I had to have some kind of sedatio,n and I had to have some form of tablets because I really wasn’t coping at that stage. But a nurse I came across gave me a leaflet for Hope House Hospice, which is a children’s hospice in North Wales and they have a hospice in Austria as well. And they said, you know, there’s this or we’ve also got a talking therapies. So I phoned up the talking therapies first, and I have to laugh because I don’t really know what else to do with it, but they said, right, we need to assess you first. So they they assessed me over the phone, told me I was too severe for them, and no signposting at all. So luckily, I had the leaflet. So this was my last chance really, because where else was I gonna go, and do you know what, I phoned up Hope House and the lady who answered the phone became my counsellor. They saw me within days. And what a difference. What an amazing service. What an amazing lady. I mean, they were dealing with, you know, the deaths of children from stillbirth through to 25. And their counselling was ongoing. So you had them as long as you needed them. And you know, her first words to me were, “I’ll walk by your side through this until you don’t need me any longer”. And that makes me fill up now because to hear that, you know, when everybody else has either walked away, can’t cope with you or … it’s like somebody has just turned the light on for you. And I had three years on and off counselling. And this included not only talking but I wrote a diary for Sam while I was pregnant that was intended for Sam to read and it was written up to 20 weeks. I couldn’t write it after that, but Jane, my counsellor, we talked through it, she read through it, she cried with me. She laughed with me. She looked at everything. By this time, my phobia of babies was so bad I couldn’t go to the supermarket or walk down the road. So Jane came shopping with me. She desensitised, she did lots of work, very person centred and she wasn’t textbook by any stretch. She’s amazing. She’s now their lead counsellor. But she would come, she said, “right, we’ll start off in the car park at the supermarket” and that’s where we started. We went to the cafe and we sat there and after about five, six months, we were able to go down the baby aisle, and she did this by My side. If it hadn’t been for her, and that service, I probably wouldn’t be here now. And she saw me through losing another two babies. Because two years after the very traumatic loss I had, I fell pregnant naturally again, and lost that baby at 10 weeks and then went on to have another early loss. And we also had failed egg donation treatment in the Czech Republic in that time as well. So yeah, amazing service. Amazing lady.

Alison Ingleby 39:43
And that’s a charity. I think it’s a charity.

Philippa Davies 39:45
Yeah, Hope House Hospice is a charity. Just incredible.

Alison Ingleby 39:49
It sounds like you went through the worst possible route to get there, but you ended up in completely the right place for you.

Philippa Davies 39:56
Absolutely. Yeah. I was so lucky in the end. I was so lucky. And again, I have to say lucky because you’ve got to take some positives away from this. And actually Jane that said to me, because she knew I wrote and she’d read some of my children’s stuff. And it was Jane who said to me, it would be amazing if one day as a writer, you could put your journey on paper with Sam or however far you want to go. Because it will be amazing for other parents, and maybe help health care professionals to see an honest journey from start to finish. So this is Jane’s fault.

Alison Ingleby 40:44
So we’ll onto that in a minute. But I want to ask you. I guess, what is a really difficult question for me to ask and probably an even more difficult one for you to answer. You’ve had five losses in, I think, seven years …

Philippa Davies 40:59
Eight years, yeah.

Alison Ingleby 41:00
At what point did you think this is, I can’t do this anymore? This is the end of the road,

Philippa Davies 41:07
The egg donation treatment, when that failed. Where else do you go? You know, and by that point, age wise I was at the end of the line, financially, I was absolutely broke. And emotionally I was … I don’t think there are any words for it really. You know, I was supported by Hope House and I functioned and I was lucky to function. So there was just yeah, I never wanted to give up and never want to say goodbye and I still don’t … I still haven’t been able to accept that I’ll never be a mum. That has to come at some point. Cos I know I reached the end of the line but I Still, yeah. Struggle with that. Very badly.

Alison Ingleby 42:05
Thank you. Sorry, I’m tearing up. No, thank you for being so honest. And I think one of the reasons that I really wanted to speak to you, so I’mfairly new to the baby lost community still, but I feel like even within what is generally now I feel quite an open accepting community, there are still subjects that people don’t really talk about. And one of those is is reaching the end of the road and, and I think it’s maybe because every, you know, every parent who goes through losing a child hopes against all hope that one day they will be able to bring home a living child. And as you, reaching reaching the stage where you know that’s not going to be the case for you must feel like such an isolating experience. And I know you’re not the only person who has had that experience. So I do hope that if people are listening to this who have had that experience, they can kind of relate to that a bit more. Have you ever managed to find a community or other people in a similar situation, or have you had to manage it alone?

Philippa Davies 43:19
I’m not a great group person because I don’t have a huge amount of confidence, self confidence, which people don’t believe because I’m a lecturer and I’m a writer and I can communicate, but actually take all those layers off and I’m not a particularly confident person. So a group thing, and that was probably part of the issue in the first place trying to get help was because I needed the one to one support with it. And I haven’t … most of the things that I’ve seen in terms of social media and community tend to be manned by people who have been able to go on to have children and I think that , and it doesn’t make it any easier….

Alison Ingleby 44:06
It’s a barrier.

Philippa Davies 44:06
Yeah, it’ as huge barrier. Because I still in my own way feel like a freak, not not to the same extent that it damages me anymore, but I’m on the outside of the window looking in. And, you know, I’ve had five pregnancies, I’ve had pregnancies I’ve taken babies through pregnancy just like other mums, but I just couldn’t get there. I couldn’t keep my babies alive and not that there was anything I could do, but … and then I yeah, so you come out the end and you’re still a mum, but you’re a mum without a baby. And because I always strongly believe that the minute you find out you’re pregnant, you’re a mum. Everything in your life changes. So to come away from that losing one baby, two, three, four, five babies, and then have to walk away from the whole thing is … that is probably the aspect I still haven’t properly come to terms with and no, there’s very little support for that. And it’s amazing what people say to you. Everything from “Well, you know, babies aren’t that important anyway” and “You know you focus on your career and go and get yourself a hobby”, and I’ve had this said to me by people quite close to me. Not only have you grieved, every baby you’ve lost, but you then have to try and grieve your motherhood. And there is nothing out there for that. There is nothing and I think people don’t … there’s a lot of people don’t actually take that seriously. I think when you say to them, you know, well, I don’t generally say it because there’s not many people who would understand it, but that’s a huge hole to grieve. I’ve got five holes plus my own identity.

Alison Ingleby 46:11
Yeah, it’s like five holes within a great big void inside you.

Philippa Davies 46:17
Yeah. You know, I said on Twitter not long ago, that I actually feel more hole than human, you know, at times and I do.

Alison Ingleby 46:28
There’s an amazing sculpture and I can’t remember the name of it. If I can find it, I might put a link in the show notes. And it’s, I’m not sure if it’s specifically baby loss grief, but it’s a grief sculpture of a person hunched over. I don’t know if you’ve seen it, but it’s a metal sculpture and the whole of their body is a hole, literally, and it just, and that kind of depicts exactly what it is.

Philippa Davies 46:51
Yeah. So it’s … there’s even … People struggle to talk about baby loss and there’s very little support there. It is improving. It is improving. But I think because it is such a buried taboo subject, there’s very little support but when you get to the end of the line, there’s even less support, there’s nothing at all and that and that is a horrendous thing to face. And people don’t want to think about it, you know, if you already have a family why would you want to think about losing babies or having no children at all? Mums struggle, mums and dads struggle with their kids leaving home to go to university. Imagine what it’s like if all your children die and you’ve got nothing. I’m nobody, you know, but yet that is not seen, I don’t think, as a problem. It is a problem.

Alison Ingleby 47:52
Yeah, for sure. Okay, so let’s come on to talk about writing then. You’re a writer. I’m also a writer. You’ve written a play, Dancing in the Wings, for Sam and based on her story. So, why did you decide to embark on this project and when did you feel able to do it?

Philippa Davies 48:14
As I mentioned before, Jane, my counsellor, it had been a suggestion of of hers. And something that at the time I turned down point blank and said, I won’t be able to do that, that isn’t anything I’ll be able to do. You know, I couldn’t get past Sam’s 20 week diary, you know, let alone … I could write children’s books because that was almost like skipping on a little further. But writing a play based on my experience was something I was never going to do. But about 18 months ago, I’d almost become reclusive. Other than going to work, where I could put a mask on, um, outside of work. I Just put myself in four walls, or spent time with my ponies or my dogs and stayed fairly isolated. And I can’t remember, I don’t even know the point at which I made a decision. I think it was probably as my relationship was breaking down. I decided that I had to do something. And I’d gone back to see Jane again. And because it was kind of on and off in the end when I saw her, and she said, “the biggest problem you have right now is your isolation. So let’s just set a target, let’s just do something”. And I grew up in theatre. I started my first paid job was backstage at the Theatre Clwyd in Mould, which is where my play is going to be launching from and it was an environment I’d always felt safe in. Because again, it’s something you can put a mask on with. So I decided that my first step out was going to be theatre. So there was a friend of my dad’s who’d come back to the area and he’d just joined a theatre group and I linked up with him somehow, I can’t remember how, but he said, Why don’t you just come along for a meeting? Why don’t you he didn’t know what happened to me. So I went long, and they were writing a play at the time. And I don’t know, I don’t know how I got roped into it. But I ended up being offered the part in this play, which is a huge step from somebody with PTSD, anxiety, depression who’d been reclusive for so long, but I guess I thought, well, I’m putting a mask on for this to you know, let’s, and I’m not an actor, by any stretch. I am a writer, not an actress, I should be behind the stage, not on the stage. And what made it worse was that I actually, as part of this, I had to play a nurse who fell in love with a soldier and had to kiss this man on stage. So, I’d gone from one extreme to the other. But the key to all this was that the groupwere really lovely. And I hadn’t told them what I’d been through. The man that I had to act opposite with was amazing. He’s professional actor, and has become a really good friend. And it’s because of his trust and belief in me because as a professional actor, it doesn’t matter to him, he’s not bothered, you know, but to me, it was like trying to trust somebody. It took me until dress rehearsal to actually kiss him. We’ve gone through four months. Do this, I’ll give you a hug, but I can’t do this… So we got to dress rehearsal. And anyway, he was really lovely, and it was almost like the trust he had in me and we developed a really good friendship and he, yeah, what an amazing guy. He also works for the police, as well. And after our first performance, I actually messaged him, I didn’t tell him face to face, I messaged him and explained to him why it meant so much to me. The way he treated me, the way I’d been able to do this, and how much I’d actually achieved by doing this, and I told him what I’ve been through. And from that moment, he almost, he almost became a bit of a mentor and a guide to me. And he helped me … I told him what Jane suggested about writing and I said, if I ever did this, I’d have to do is apply. So he said, “come on then, let’s do it. And Si, I’ll never forgive you for this.

Alison Ingleby 52:49
But accountability!

Philippa Davies 52:52
Yeah. So he was amazing and most of our relationship was via messenger once we finished the play. He stood by me through the whole thing from the first words I wrote, he supported me emotionally and if I took it because it was horrendous, writing that and having to dig up everything was horrendous. Obviously, it wasn’t me it was another couple and you know that you have to put changes in and you have to make it theatrically, you know, appealing. So he stood by me from the first words I wrote, and every time I went down, he said, “No, come on. We’re okay. We can do this.” And he’d been through similar family experiences himself, which I hadn’t known till later on. But I wrote it and then I approached Theatre Clwyd and I said, “I’m doing this Can you help me now?” So it only took me about eight weeks to write the first draft of this play, but then I took it to a professional writer and helped me edit it. And then a team of professional actors helped me edit it and it was rewritten five times. Before we got to the point … I mean, I had a certain timeline to go by to fit in with booking theatres. But yeah, we got through five drafts, and Si stayed with me all the way through this and the hope had been that he’d take on the male lead. Unfortunately, he was involved with another professional tour, so when it came to auditions he couldn’t do it. But yeah, that we’ve since when we … when I got it finished, I approached Betws-y-coed health board, which was very brave. But I approached their chair and I said, “Look, I’ve done this and I’ve done it because I want to raise awareness and understanding and support, and I’ve been very honest. This is a very raw play. I’ve been honest in in all of it.” And he responded to me within three days. And he sent consultants and bereavement midwives and midwives to the launch forum that I did for the play. And I had a launch forum because I was really worried about any actors taking on roles within the play. I wanted to make sure that they knew what they were taking on. And again, Si did all the read through for me when when we did the forum. And just to make sure that actors were aware how challenging it was going to be emotionally. So we’re now at a stage … that was back in April, in September, we auditioned and we had a we took on a cast and they started rehearsing just before Christmas. So it’s it’s really exciting. I went back, I actually started up PhD in September. This is my way of trying to find a life that I could accept without being a mum. And I went back to research stuff that I used to do many many years ago before all of this happened. And I was offered a PhD, which is amazing really at my age, so I’ve been up in Aberdeen since September while they’re rehearsing back in North Wales and I hold my heart my hands.

Alison Ingleby 56:30
If anyone if anyone is listening to this and doesn’t live in the UK or isn’t aware of UK geography, that is a long way, not by like American state distances, but that that’s a long drive.

Philippa Davies 56:39
It’s an eight hour drive. It’s 450 miles. And when I have to take my two dogs down with me, it’s a very long drive. But yeah, so I kind of … I struggled with the auditions because it’s very hard to let go of something so personal. And the poor director, she had a nightmare with me, but at that point, I stepped back and I said, right it’s yours, it’s yours to do with and I trust it into your hands. And I went back.

Well, I didn’t do it very well! It was incredibly hard. I think the hardest thing was trying to find the two lead acts, you know finding the female and male lead. And I already had it in my head that Si was going to take my lead, and I’d been comfortable with that, so when that didn’t happen, that really threw me through the floor. But I’d identified the lady, amazing lady. I mean, we did audition, there were a number of people who did audition for Rachel’s role. The lady I’d already met some months before, she’d done the read through with Si back at the forum. And just amazing. I knew when I first met her, from the instant I met her, that that was the lady I wanted to play female lead, but it wasn’t my decision. So it was incredibly hard when it came to auditions. Luckily, Lisa got the role. And so Lisa is playing Rachel and that’s amazing. So yeah, I went back to see an early or early rehearsal before Christmas. And I sat and I cried my way through rehearsals, and they’re doing such an incredible job. I’ve never seen anything so fantastic at such an early stage, so yeah, I cried my way through it. But they’re doing great. So yeah, it’s coming on really well.

Alison Ingleby 57:08
That must have been really hard to do. I think again, as a creative, I can appreciate how close you can get. And you know, we always say you write the first draft for you, and then you write the second draft for your reader. And by the time it’s been through your editor and stuff, you have to distance yourself from that, but how you distance yourself from something which is so much of a part of you. And you know, it’s so intertwined with all these emotions and things that you’ve gone through over a few years. I don’t know how you managed to do that.

Fantastic. Well, we are about out of time, I’m afraid. Thank you so much for sharing your story. As I said before, I’m so grateful that you’ve been brave enough to come on this podcast because it is an amazing story. And I’m sure there are other women who out there who can relate to you experience. And just before we close, can you let people know where they can find out more about you and more importantly Dancing in the Wings and when it launches and all that stuff?

Philippa Davies 59:36
Absolutely. So I suppose my main outlet at the moment is Twitter. So you will find me on @Philippawriter, I think you’ve got all the information for this. If people want to contact me they they’re more than welcome to message me or, you know, I can give you an email address that people can have. I’m more than happy for people to contact me. With regards to Dancing in the Wings, that starts its opening night at Theatre Clwyd in Mould on the 27th of February, and it runs three nights in Theatre Clwyd, and you can get tickets on their website and then it goes over to Wrexham in a little theatre. And I’ll give you all the information for this and that’s the following weekend. Runs Friday and Saturday night. It then goes over to Caernarfon, to Northwest Wales for one night. I can’t remember the exact date for that. But again, they run one weekend after another. But the final night, and this was the night I’d really hoped for, will be in Chester. It’s doing two nights at the Forum Theatre in Chester on the 21st and 22nd of March. The final night is the night before for Mother’s Day, and that was intentional. So that’s where we end at this stage. And that’s and … do more than welcome to come and see it. It’s not particularly aimed at bereaved parents, although, you know, because you already know the story, but you know if you want to feel less lonely … But I would love for healthcare professionals to come and general public and just anybody really.

Alison Ingleby 1:01:32
It sounds it sounds like an amazing play and amazing performance and best of luck with it. I hope it goes really well.

Philippa Davies 1:01:40
Thank you. Thank you so much.

Alison Ingleby 1:01:43
Thanks very much, Philippa

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