Episode #2 Premature Twins, Neonatal Loss and Pippa’s Legacy with Ian Twitchett

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In this episode of Footprints on our Hearts, Ian Twitchett shares the story of his daughter, Pippa, and we discuss grieving as a dad and the charity he and his wife set up in Pippa’s name. We also talk about the National Bereavement Care Pathway, an NHS initiative to improve bereavement care for parents who suffer pregnancy or baby loss.

In this episode, we talk about:

  • His twin daughters, Pippa and Penny, who were born at thirty weeks. Four and a half months after her birth, Pippa passed away in Ian’s arms at Martin House hospice. (06:05)
  • How Ian and his wife, Hannah, grieved differently and how they supported each other. (36:08)
  • How they remember Pippa as a family. (43:00)
  • Setting up Pipsqueaks to help parents during their time on neonatal units. (48:45)
  • Ian’s role on the Parent Advisory Group for the National Bereavement Care Pathway. (54:50)

You can find out more about the charity and Hannah have set up at Pipsqueakscharity.com.

You can find Ian and Hannah on social media at:

Facebook – https://www.facebook.com/twinchetts/

Instagram – https://www.instagram.com/twinchetts/

Twitter – https://twitter.com/pipsqueaksuk

In the introduction, I talk about the debate in the House of Commons on historic stillbirth burials and cremations. You can watch Carolyn Harris’s emotional speech here and read more about Brief Lives Remembered, a website that helps parents trace where their stillborn babies were buried, in this article.

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.

Episode Transcription

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 Ian our first but hopefully not the last baby loss dad. Welcome to the show Ian. Could you start by briefly introducing yourself and your family for us?

Ian Twitchett 0:16
So, I’m Ian, I live in Leeds with my wife, Hannah, two children. Evelyn is six and Penelope who is now two. Penny is a surviving twin, and she was born alongside her twin sister on August 15 2017. They were born 10 weeks premature. Penny weighed 977 grammes and Pippa only 726 grammes. And due to quite a complicated pregnancy, the decision was made to deliver them at thirty weeks just to give them the best chance. And with Pippa being the smaller twin it was predicted that she’d have a bit of a tougher battle. They spent four weeks at Sheffield where they were born and, and then spent a further four weeks at St. James’s in Leeds closer to home. And we had a relatively straightforward a little journey from sir. It was up and down as we were told it would be but there was nothing serious, no surgeries or anything like that. They did need a little bit of breathing support but the main thing was just time and trying to get them up to a size that was big enough for them to come home. And after eight weeks, they came home. And then just after three days, Pippa just suddenly turned really poorly. And so we took her straight back to hospital where she was taken to A&E. No one knew what was wrong with her. Her breathing was shallow and she looked incredibly pale. It took… I don’t know quite how many people in that room at the time that just just came from nowhere there was so many people working on her and she just looked completely lifeless and we were so worried. It took them a while to stabilise her and then they readmitted her to the neonatal unit. Where she’d spend another 10 weeks? Those 10 weeks were quite difficult. And they say like, life’s a roller coaster. That time in neo-natal was a rollercoaster. You’d have so many days of going up. So many days are coming down, but those ups weren’t particularly massive ups. They were just days where we weren’t having much negative news. It was just pretty stable. But the downs were pretty serious downs. And she had I think we counted 16 blood transfusions in 10 weeks, and countless other products of blood products, etc. And so many different medications and she picked up a couple of infections along the way. But because of a size, there wasn’t really much we could do other than just wait and see what would happen. She needed a liver transplant but because she only weighed 1.62 kilos, when she was readmitted, they wouldn’t consider a liver transplant until she was at least four kilos. So we knew we just had to wait and when we were told that it was going to be about four kilos until they would consider it we knew it was gonna be a long journey. And it’s just yeah, that those 10 weeks are probably the hardest 10 weeks we had – just not knowing what was going to happen. And then, this is sort of around the Christmas Christmas period. We were really, really struggling. Hannah’s uncle passed away a few weeks before Christmas that year, and everything just felt like it was just piled on top of each other, it was it was getting really, really hard for us to try and cope, especially Hannah as she took Tony’s death quite quite hard. And Tony was like a legend in the family’s eyes – this aura of invincibility, nothing could happen Tony fought cancer three times and he just seemed like nothing could stop him. So when it did it just felt horrible. And then we had all that going on with him in the hospital. It just it just everything just piled on top. And it was only really then that the guys in the neo-natal unit could see that Hannah, particularly was truggling and we were offered some counselling on the ward. I don’t really know much of what went on, it just it just all seemed very blurry. Really hard to describe what was being said on those days, everything is just really … the best word to describe that would be fuzzy. Really hard to remember any full conversations. Everything was so pressured, it was really hard to keep track of what was going on with Pippa and everything that was going on outside the hospital. And so we were, we were offered some respite to go to Martin’s House for Christmas. But we decided that we wanted to try and keep Christmas as normal as possible for everyone. And being a hospice surrounded by the families just wouldn’t be normal for Evelyn. She was four and this was probably the first Christmas that she would really remember so we wanted to try and keep as normal as possible. So we decided against the respite and tried to just juggle everything as normal. So Christmas came and went and just after Christmas, there was just one day where I was off work, Evelyn was off school, obviously, and we just decided that that day was going to be a day where we would have no interruptions. No one would have to rush off to work or to go get Evelyn from school, Evelyn was was at her grandparents. And there’d be no reason for either of us to have to dart off somewhere or do something, so that day we planned to spend the entire day and night besides. What we got to the hospital, we could see Pippa wasn’t quite well. She seemed really agitated, I guess you’d say really unsettled. The nurse was with her constantly just trying to keep her calm and try and settle things down. And then over the course of the next few hours, that situation just became worse and worse, and she was just deteriorating really quickly. Over the course of, it must have been about five or six hours, she went from looking from settled and agitated to looking just incredibly poorly. And then we were … there so many people in the room at the time. Penny was still with us, she was being changed by Hannah at the time that she’s screaming and kicking off, their voices always trying to keep Pippa calm and trying to stabilise her and a consultant came in and basically just told us that Pippa’s treatment had stopped working and she’s snot going to survive and we had to make a decision. But we didn’t really know what the decision was because it sounded like she will survive so, um, we … Hit that on the 28th of December. On the 29th, we were just sort of sat around in a room just with our family. My mum and her partner came, Hannah’s parents were with us and her sister was there. Some of the neonatal nurses came up from the ward to say goodbye to her and then we went to Martin’s House after but before that we hd to say goodbye … Explain to Evalyn that we had to say goodbye to the sister and that in itself – trying to explain to a four year old what we were about to do … It sounds ridiculous that you have to tell a four year old that her sister’s going to die, but we’d included Evalyn all through this. She knew that her sister was really poorly and we wanted to try and be open and honest with Evelyn – she might not quite understand that at that age, but when she grows up she’ll understand why we said it and what it really meant. And then uh, yeah, we took Pippa to Martin’s House. The familywere there when me and Pippa arrived in the ambulance and Evalyn got one last hold of her before they took off the support and then passed away in our arms after about 90 minutes, just putting up one last fight and just passed away in our arms, surrounded by family and her sisters.

Alison Ingleby 9:21
And I think she was about four and a half months old at that point, is that right? Yes. That’s right. Yeah. Thank you so much for for going over what I’m sure is an incredibly painful story, Ian. And I think one thing that perhaps that’s your story apart from other people’s, is that it wasn’t just a moment where you found out she was going to die or she died, you had this whole roller coaster as you described it, probably not just even from when the twins were born, but before that going back to … I mean, I guess back to the very beginning. Because having twins by itself, you know, is no mean feat. So, going back to when you found out that Hannah was pregnant with twins, how did you feel at that point?

Ian Twitchett 10:15
I remember we sat in this waiting room, St. James’s, and we both we both sat there in stunned silence for so long. Just couldn’t believe it was happening. And then I remember phoning my mum and we were still in this waiting room for quite a while and I remember phoning my mum and saying, We’ve got some news for you, and I think she could tell her that I had a bit of a smirk on my face. She just said, “you’re having twins, aren’t you”. And it took quite a while to get my head around the fact that we were having twins. Just everything that came with it. We’d had Evelyn, so had a cot, we had everything that we needed for for one baby. Everything was planned just to have one so then all those plans go straight out the window when you find out you’re having two. It took a little while to get our heads around it but the feeling of having twins is very special. And that’s that’s what hurts me now actually, just the feeling that we had that and now it’s something we don’t have, we can’t have, now. But yeah that feeling. Once you got over the initial shock the feeling it’s just, it was amazing. It was so … Evalyn was so happy – we got video of the moment we told her that she was gonna get two big sisters – it’s the sweetest little video in the world. And Evalyn gets upset at one point because we were trying to tell when the birthday was going to be, and when she found out that her birthday was going to be after the twins’ birthday, she fell apart and got so upset that the twins were going to be born before her birthday. I think she thought her birthday was going to be forgotten.

Alison Ingleby 12:04
And you said, Hannah had a complicated pregnancy. And so we’re and obviously the twins were premature. Was that a sort of plan decision to have them at that time or or were there sort of other complications and factors leading into that?

Ian Twitchett 12:22
I think it might have been about 18 weeks maybe 20 weeks when we had the scan that showed Pippa was falling behind Penny in terms of growth. And there were real concerns at 20 weeks that Pippa was going to have a real struggle here and she might not even make it to be born. So with that, Hannah was monitored so closely and they did such an amazing job, and she was scanned 33 times in 30 weeks. Just checking the blood flow to to both twins – it was Pippa’s blood flow that was the concern, sometimes it was in reverse, sometimes it was no flow at all. But they they talked about getting her to a viable way which is considered 500 grammes. And once she was at 500 grammes, they would consider that a viable weight to survive. So they wanted to get her to that weight before they would intervene. And, after that they would deliver and they thought that would be the best chance she would have. So Hannah over the next 10 weeks after that was scanned so many times and there was just a decision made at, I think it might have been about 28 weeks. And then from that point she was scanned daily, even over the weekends, and they said that once Pippa’s blood flow looks inconsistent, consistently, if that makes sense, they would make a decision to deliver. And that happened at exactly 30 weeks – they decided that we have to deliver now. Pippa’s weight was okay. And the obstruction phoned upstairs to see if there was any space for the twins to be delivered and there wasn’t, so he sent us on our way. I remember it was, it was when season seven of Game of Thrones was on. We came back from the hospital, watched an episode of Game of Thrones and I went off to work. And I’ve been at work for about 30 minutes and Hannah phoned me up and just said “there’s space in Sheffield. We have to go there tonight. They’re gonna deliver the babies tomorrow”. So they were born the following day in Sheffield.

Alison Ingleby 14:55
Gosh, I mean, I can’t imagine how difficult that must be. Both knowing that, I guess there might be issues with with Pippa’s development but also Penny’s development and making sure that she gets the best chance, both of them get the best chance of life, and, I guess having to go through that day after day, week after week, kind of holding on up to that point, it must have been incredibly stressful even before that birth. Then they were born and then I guess they spent quite a bit of time in the neonatal unit – was in Sheffield?

Ian Twitchett 15:34
Yes. And the team in Sheffield were absolutely amazing. I remember just, the moment they were born, I was sat with Hannah, and we couldn’t hear them crying. We were both looking at each other thinking the worst. And then we heard this noise it sounded like… like one little cry and both our eyes lit up. And then I got tapped on the shoulder and said “do you want to come through”, and I went through to this room and there was so many people in there and I was stuck between these two tables with them both in these little plastic bags and they’re trying to put tubes up their noises but because they’re so small they’re struggling to do that for them. And it felt like the moment they were stabilising them to the point where they got them into the neonatal ward into incubators, it felt like that was hours. And then I was told you know, let’s sort these these girls out and then you can come back later on – go back to see Hannah. So they led me back through and it felt like I’d been stood there for so long. But then when I went back into the operating theatre and Hannah was still being stitched up, and i’m like, how long does this take? Then she went off into recovery and I was like, “What time is it?” I look at my watch and it was like 20 minutes. Because of Hannah’s time recovery, she couldn’t get to see the girls for about eight hours after that so I was running backwards and forwards to the ward, taking pictures for her, running back upstairs and showing her these little pictures of the girls and letting her know how how the condition was. They were actually, okay, they were there on C path at that point. And, and they weren’t in … Considering their size, they weren’t in too bad a condition. They were actually okay. They were going to need a lot of support, which is what they said straight away, but they weren’t incredibly poorly if that makes sense. They were very, very small, but they just weren’t incredibly poorly. They were okay.

Alison Ingleby 17:37
And what was Pippa like as a baby.

Ian Twitchett 17:42
In the early days, like the first few days and the incubators, she was by far the feisty one, she was the one who would kick and scream and just if you want to go in there and she would throw her arms and legs everywhere, whereas Penny was the calmer one. But then as time went on, Pippa became the more mellow one and I don’t know whether it was because she was unwell or anything, but she just seemed calmer. Penny now is fearsome. It’s terrifying how fearsome she is at two years old because when we consider what Evelyn was like it two years old, Penny is … There’s just something about it. It’s just so bright and, I don’t want to say magical, but she’s just so alert to everything and that … Because they’re identical. I like that because it makes me think how it would be, and whether Pippa would still be the mellow one looking at a sister and thinking “just come down”. But I don’t know. Yes, but in the time we had she was definitely the more mellow twin.

Alison Ingleby 19:00
So you finally got them home after what, eight weeks or so. Did you relax at that point and think, okay, we’re going to be okay, we’re a family now, we’re home.

Ian Twitchett 19:13
Yeah, it was, the discharge was…I don’t want to say a mess because they do just handling the situation that there was on the unit the time but they would due to be discharged at the same time. So Hannah, and I knew Penny was ready to ready to come home, but Pippa just needed a little bit more time, as they wanted to get her to 1.4 kilos before they would be comfortable to discharge it. So it was a Friday when Penny came home. And I remember we’d been to the hospital, and then we we came home. So we were just doing the finishing touches to the nursery, doing a bit of painting. And then the phone rang and it was the neo-natal unit to say “come and get Penny, she can come home now”. We would just like “what? Really? Why now?”. It just all happened very, very quickly. And so she came home at the weekend, we were at home with her, obviously still popping back to see Pippa. I think it was the Tuesday after that I think Pippa came home and Ijust remember that feeling of walking through the door with both carseats, putting them in the living room and getting them out and just laying them together on the blanket on the floor. And the cat that we’ve got just came in and flopped down next to them. We just felt like everything was done, we were completed. We’ve gone through this horrible journey of neo-natal, just waiting to come home with our babies and we’d finally made it. We’d thought that that was that was it. And it was the best feeling you could imagine to go through that journey to then be home with these two incredibly small babies that come through so much that point and it was such a lovely feeling to have all of my girls in the same room.

Alison Ingleby 21:08
And sadly, I think, eight days later unfortunately Pippa got sick again and then was readmitted to hospital where she stayed pretty much up until near the end. But I think you said that for her final few hours or a day, I’m not sure how long, she was taken to Martin House hospice. Could you maybe talk a bit about what Martin House is and and the sort of care they provided for you as a family? Yeah.

Ian Twitchett 21:43
Martin House is probably the most amazing place in the world. Which sounds really strange is that somewhere where we took our daughter to die, basically. What they do and what they gave us, was just the most amazing…. There was so much love and dignity and patience and everything, there was so much they gave us. And while we were still at the hospital deciding what we were going to do with Pippa, whether she was going to stay at the hospital or whether we would go to the hospice, we met someone from the palliative care team at Martin House. She came to see us and told us what, what would happen at the hospice, the care that they would give Pippa, but also the care that they would give us, I think, at that point, because we spent probably just over 24 hours knowing that Pippa was about to die. And tyring to think what happens next? And I think at that point, Hannah and I both knew that we would need some help, we’d need some support to try and get through this. We were told that Martin House would give us give us berevement care. They’d also give Evelyn some sibling care. So she’d go up in groups with other siblings who would also lost a brother or sister. And, and then the care would also move to our our parents as well -grandparent care so they will be invited to groups to be around other grandparents who’ve lost grandchildren so it was a much… I’m trying to think of a more practical way to describe it. It felt like the care that we were going to get from Martin House was going to be better than what we probably get from the hospital. Hannah and I both agreed that all we wanted for Pippa was just some peace, because we hooked up to machines 24 hours a day, having people prodding at you. She had so many heel pricks, and I don’t know how you’d enjoy having your heel pricked three or four times a day for 10 weeks. It’s just not nice, so we just said she suffered enough so whatever we do with or do for her just had to be peaceful. And Martin House just ticked all the boxes for us. They said that this would happen. And we just went with it. They arranged everything for us. And we went in the ambulance, just me and Pippa and I thought about what we’d do at the house. Our family were going to be there waiting for her and I wanted all the family to have one last chance to say goodbye, to hold her. And so we arranged for Pippa to be passed to each member of the family in turn so they each had time with her while she had her breathing support still on her. After everyone had had a moment with her, she was passed to Hannah and me on the bed and we just sat with her. For about 90 minutes. It’s … that’s probably the hardest part for me, just knowing that my daughter was in my arms and over however long it’s going to be, I think we knew at that point it wasn’t going to be long, because we knew that she needed so much support and we’d taken that away from her. We knew that that was going to be over pretty quick. And I said there were a couple of moments where I said that she just had one last crack at life. There were a couple of moments where we were sort of sat there and she just seemed really quiet, really peaceful and we thought this was the end and she just perked up a little bit more, and she just carried on fighting for so long. I remember just saying to her that it’s okay, I mean, it wasn’t okay all but just remember trying to keep her calm and stroking her head, and everyone around us knew that point that we were watching our daughter, slowly fade away. She put up a fight for about 90 minutes and then she was sat in our armsand she passed away with Evelyn on one side and Penny on the other side and … um, it sounds really strange to describe that moment is beautiful, but I would have wanted that moment to be any different because it was just … To talk about my daughter dying is hard enough, but to describe the end of her life as beautiful. It sounds really – feels really strange for me to describe it like that but I couldn’t have wanted it any other way for her. Everyone who loved her the most were around her at that time and you couldn’t ask for any more. Martin House just did everything for us at that point. Hannah. I remember Hannah, just after everyone had gone home for the short while after Pippa had died, Hannah wanted to bath her. And I remember sitting in the room thinking I couldn’t get my head around it. But Hannah’s logic was the only baths that Pippa had had were when she was hooked up to a machine, she had breathing support on or she had some something being pumped into some part of the body. But this was going to be her first bath that she would be completely wire free, tube free. And Hannah mentioned it to the staff at Maritn House and out of nowhere, this stuff appeared and it was just there and they rushed off and just did everything for us. And we spent about four days there after. And we were never rushed. We always have staff with us. Evalyn had so much support and being taken off to do activities. There was loads of memory making done, they started funeral arrangements and contact our GP. They did so much for usin that short space of time. And it was the 30th of December when she died. I work in hospitality. So I always work for the new year. And I always, I’ve always said for years and years and years, I’d love to have a new years off. And I had that new years off. And on that New Year’s Eve, we were all in bed by about nine o’clock. And the people downstairs and the rest of the hospitals were bringing in the new year. And Hannah, and all the girls went to sleep and I just sat there and I remember going downstairs. It was about 10 to midnight. And one of the staff saw me and I said can I go down to the cold room to be with Pippa. And I remember sitting with her through midnight and we were playing music, I was singing to her, and these cold were freezing, I had a winter coat on sat next to her and just singing songs shivering. I spent about 20-25 minutes in there with her and then went to bed. But since then, I always want to work new years now, I never want a new years off again. Because I’ll just sit there and think about that moment. But anytime that we wanted to go to that room, they’d jump up and take us down there. I cannot have enough good words for that place they are the most amazing bunch of people. Yeah, just the most amazing place in the world.

Alison Ingleby 29:51
It definitely sounds like they helped to make an unbearable experience, just perhaps a slightly bit more bearable. In what they did. So just moving on now to talk, I guess, a bit about grief and your experience of grief. And particularly how do you feel that you grieved perhaps in the same way as Hannah but also maybe in a different way. Did you feel like your grief journeys were on different tracks some of the time?

Ian Twitchett 30:27
I’d say me and Hannah grieved differently most of the way through to be honest. Hannah is incredibly strong. We both recognise when each other are having a bad day. We have bad days all the time. And we don’t have to tell each other we’re having bad days, we just recognise we’re having a bad day. And for me, generally, if I’m having a bad day, I’ll normally find myself sat in the corner in the living room we have with Pippa’s box and I’ll be sat there just next to her, pretty quiet, sometimes a bit teary. Hannah will … She won’t act like that, she’ll just become very quiet and a little bit withdrawn. And I recognise that she’s not herself when she’s not playing with Evelyn and Penny and is much really quiet. And I can tell that she’s off it. And we don’t ask each other if we’re okay, because we’re not. We just sought of jump in and take the reins and take over the bits that are missing. So if I see that Hannah’s kind of struggling a little bit, I’ll jump in and sort the kids out and I’ll bath tham both and take them both to bed and read bedtime stories and I’ll do all the duties we’d normally share. And the same thing would happen if I was in a rut. Hannah would do all the things I would do it. We just to seem to be able to connect very well and recognise that we’re having a crap day. Hannah will sometimes try and push through a little bit, which I’d probably say isn’t the right thing to do. But she tries to ride out the best she can to the point where sometimes she just gets really upset and she’ll have a bad day. Whereas me, I … completely forgot to mention that Hannah miscarried 12 months before Pippa was readmitted, and I I tried to take that in my stride and just tried to crack on with that and I fell apart about probably about a month later. I tried to bottle it all up in there. I’m okay I’ll be fine. Everyone else okay? That’s what my job I was just trying to make sure everyone else was okay. And I learned the hard way as just about a month later I really had a very tough time. So, after we lost Pippa, I realised that that was the completely wrong way to to react, trying to make sure everyone else was okay. I had to look after myself and … I’m not afraid to cry, I’m not afraid to get upset anymore. It’s just good to cry, to lay it all out, cos bottling things up just isn’t good for you at all. So, yeah, my grief’s a little bit more obvious than Hannah’s. But we both know how to support each other and how to recognise it.

Alison Ingleby 33:30
And it’s interesting that and I didn’t realise that you’d suffered a miscarriage as well. Perhaps that earlier loss had, in some way prepared you for this later loss in terms of how you grieve and how you go about doing that. And did you feel any expectations from anyone from society, from people you knew, about how you should grieve being a dad rather than a mum?

Ian Twitchett 34:03
I had no expectation to be honest. I don’t know, to this day there’s not been any support offered to either of us from the GP or anyone like that. But Martin House gave us some bereavement counselling and that that helped us totally. I’d really worry where we’d both be without that support we had. In terms of being a dad, I try and talk about this quite a lot. I feel quite passionate about that. That dads are sometimes overlooked in terms of grief or when times are tough. And going back just on the neonatal journey, you know, you’ve got a certain amount of paternity leave to take before you have to go back to work and you still got a house to pay for , still got bills to pay and mouths to feed, so I’ve still got to earn money. So you’re still dealing with the same situation you’re in on paternity leave but you’ve got the added stress of work on top of that, and that goes through to bereavement as well. So returning to work after you’ve lost your child, possibly the worst thing I think a human can go through, having to go back to work and get back to normal is incredibly tough. And employers don’t really recognise or know how to understand and deal with their employees after such a thing is happening. And there is very little support for dads. I think it’s just that … that stigma I guess, like we’re men, we can crack on and just get on with it and yeah, we’ll be all right, that sort of thing. But you know, everyone grieves, it’s not a mum thing or a dad thing, it’s everyon.

Alison Ingleby 36:06
Yeah, and I do feel and I feel that this is, I guess it’s one of those conversations which, you know, everyone needs to be more aware of and more open about. And, you know, I guess baby loss is one form of grief. But you know, there are other forms of grief and that kind of, I don’t know, we’ve I guess we’ve got that bit of a sort of British stiff upper lip as well. Which I think sometimes and obviously, it very much depends on the individual, but I feel sometimes that perhaps men feel that a bit more than women. That they are, you know, supposed to be the the provider, the one who stays strong and keeps on going. Which is why I’m really glad that you said, you know, that you felt it’s really helpful to cry and helpful to grieve and that that’s helped you through. Okay, so I just like to now talk a bit about Pippa’s legacy and how you remember her as a family as well as some of the things which you’ve done in her memory. I imagine the fact that she passed away at the end of December makes Christmas a particularly difficult time of year for you guys. And, you know, I’d also just like to, to remind people who are listening that this, you know, was only less than two years ago, so it’s still really recent and it must be very raw for you. How do you go about approaching Christmas with Evelyn, with Penny, as a family?

Ian Twitchett 37:40
It’s the same as any anniversary, so it might be a birthday or Christmas or whatever the anniversary date would be. We’re trying to approach them all the same, quite delicately. We try not to do too much and push ourselves too much. Last Christmas was the first Christmas without her, it was really tough. Especially since you know, we’ve got presents under the tree for two girls, not three girls and there’s always that, um … It’s every day as well, every day when you see Penny doing something new, it just comes flooding back that it would be amazing to have Pippa… Pippa should be there learning the same things, doing the same things. But we decided last Christmas that we wanted to include her in everything. And we do that. So Hannah is a bit of a weirdo. She oves Christmas so much, and she’ll buy Christmas decorations all year round. But it’s kind of sweet now I guess, because when she buys things it’s not just because she loves Christmas. It’s because there’s a part of our Christmas tree that’s just for Pippa. So there’s loads of little decorations that we made at Martin House. That was just after Christmas time. So we made some bubbles which are like a little snow landscape design on them and everyone’s fingerprint made a snowman on them, so you’ve got my fingerprints on them and everyone’s fingerprints around the bauble, including Pippa’s. And so that’s on the tree. We just went to York a few weeks ago, the Christmas shop. If you’ve ever been to the Christmas shop, right in the centre of York, it is the most ridiculous shop in the world in my eyes. Hannah just goes in there with these wide eyes and this room that’s just full of cuckoo clock. So we took Evelyn in and her mind is blown. But on the way down, we saw these little birds you could pin inside the tree and there’s a little bit that we’ve got, that Evelyn picked actually which is a cute little bird with pink and purple feathers. And we often talk about Pippa as our little bird that flew away. So it seemed perfect and when the twins were born, one had a pink blanket and one had a purple blankets so they’re the colours that we assigned to our twins to tell the difference at first. And so everything now is pink and purple. And whenever Evelyn picked up that bird, we just knew that was that was right. So this year, Evelyn’s going to hang this little bird on the tree. So over the years that area of the tree will just develop and she’ll be included. She might not have the presents under the tree but she’ll be included in that any way that we can. We’ll try and do that with everything whether it’s Penny’s birthday, we have, um, a really strange day on the birthday. It’s really hard to describe. I won’t say bittersweet but having Penny there, you know, you’ve got to be so happy. Remember that Penny was super tiny as well and it’s amazing that she’s she’s still with us, but then just out of nowhere it just comes flooding back that we don’t have Pippa anymore. So we got out and we try and have a nice day with a family, try and get some fresh air, go do an activity somewhere, and then in the evening we come back and we light a candle and we have some cake in the corner for Pippa. And this year was particularly funny at one point. Evelyn was singing happy birthday to Pippa, holding this little cupcake with a candle in it, and she’s singing happy birthday to her, as she’s trying to say “birthday” quite loud, she blows out the candle half way through. And we all just started rolling around, laughing our heads off. It was a really sad moment but Evelyn nailed it at that point and just turned that really sad feeling into a really happy joyous one. Which I’m so glad for because I felt awful going into that, but Evelyn saved the day. So, yeah, we try and include it as much as we can in any anniversary or any situation that we’re in.

Alison Ingleby 42:42
And you’ve set up a charity named Pipsqueaks. Can you tell us a bit about why you set it up and what you’re aiming to achieve with it?

Ian Twitchett 42:51
So, Pipsqueak was the nickname we give to Pippa the day she was born. She was out little pipsqueak, and it just stuck forever. She was pipsqueak, everyone called her pipsqueak. So we, we decided after she died that we wanted to have … her life had to become something other than a loss. We couldn’t sit on it. We couldn’t just, we couldn’t just take it on the chin, we had to do something. And we decided that … the promise we made to her that her life will make a positive difference to others. That’s what we said. And we decided we were going to go on a massive fundraising mission. And we did all sorts of thing. We did the Yorkshire Three Peaks, 21 of us did that, we did a huge raffle, a big fundraising community day where there was live music, magicians, all sorts of stuff going on for kids. And by the end of that, we’ve raised £16,500, which was for Leeds Cares, which is a charity that looks after the Leeds hospitals. And they funnel the money to whichever area in the hospital you wanted. So we decided that we wanted to give that money to the neonatal unit. And with that money, they funded the refurbishment of two bedrooms of St. James hospital so parents can room in with their babies before going home. We never actually stayed in those rooms when we were in the hospital but we saw them and they were they were really old, really dated and definitely needed a refresh. And we went to open them a few months ago and we’re actually really jealous of how good they look because they look so much better than our own bedrooms. And it’s just amazing knowing that that money raised is going to do so good for other families. Knowing right now that there’s other families at the hospital who are benefiting from Pippa, not just from us, we did this for Pippa. And so after we raised all that money, we decided that we wanted to do something more permanent, and have a permanent tribute to Pippa, which is why we thought about setting up a little charity in her honour. And so with the charity, the aim is to support neonatal units and the families on those units in the Yorkshire region. And so we spent most of this year fundraising to produce some care packages. So these care packages have been designed so beautifully by the dad of another girl at Evelyn’s school. He did such an amazing job. There’s a daily journal that’s been designed and it’s got enough pages in there to last you eight weeks. And, on those pages, you can write down your thoughts of the day, any questions you might have for the nurse … We basically based on what we were missing from the neonatal unit what we spent so much time on there. There were so many questions that we thought about. And then when the time had came when the nurses or the doctors were around, we’d totally forgotten, and then we remember later on down the line that we’re supposed to ask that question. So that’s why it’s really important to write down those questions. Never forget to ask. And there’s a bit about the nurse. After … we spent all that time on the hospital, we tried to make a list of all the nurses that we’ve come across in this four and a half months and there were so many and we know there were so many that we couldn’t remember the names of. So it’s really important to write your nurse’s name. Now, that nurse might tell you something that you might think of later down the line, might be important for another nurse or someone to be told. And there’s a bit about … this mood board, and it’s for mommy and daddy or mommy and mommy or daddy and daddy. And it’s basically little emojis, showing you how you feel on that particular day, whether you feel happy or really sad, or anxious. You just circle it every day and just gives you … It gives a nurse or whoever’s at that bedside an idea of how you’re feeling at that time without having to ask that question. There’s milestone cards, there’s toiletries for parents who had to be rushed into hospital and have got nothing with them, some mental health side signposting. We’ve tried to include some vouchers to try and encourage parents to get off the ward. It took us a little while to try and get outside and have some fresh air. But it does make a world of difference, just getting some fresh air in your lungs. Yeah, so that’s what we’ve been fundraising for to start with. So then they’ll be given to parents who’ve got quite a long stay in hospital. So we’ve said for babies born around 32 weeks or less, and they’ll be offered to parents and hopefully along the way, we’ll start putting in sibling pack. So Evalyn would have these sort of packs give to her. So she would have some activities and a few little things in there to explain what was happening with her brother or sister. So that’s the idea, and it’s only early days so there’s a long way to go, but everything that we’ve got for it so far, it’s so beautiful. I can’t wait to start giving them out at the hospital, it’ll make such a different to parents.

Alison Ingleby 48:46
I’m sure there’ll be lots of lots of parents who benefit from that and benefit from puppers legacy. I also noticed that you’re on the Parent Advisory Group for their national bereavement care pathway. And this is something it’s an NHS initiative, I think, but it’s something I’ve only really become aware of recently. So could you just finish by telling us a bit about what it is and how you’ve been involved in it.

Ian Twitchett 49:12
So it’s a toolkit for any hospital trust in England and Scotland. You sign up to it, and it’s basically to improve bereavement care across the NHS, so that it’s not inconsistent like it is now. You could literally go from one hospital on the M1 and can get the most amazing care, then go to the next junction, to the next hospita,l and that care is nowhere near as good, which is really unfair. So at the moment it’s a postcode lottery dependent on the type of care you receive after your baby died. But it doesn’t just focus on a specific type of baby loss, it’s miscarriage right up till neonatal death or through these, um, it encompasses so much … all these nine different focus points, about what good bereavement care looks like, bit of memory making. What every parent should basically get following the loss of their baby. And it’s very, very parent led. So all the initiatives, all the little bits added to it have all been run through parents like myself to help develop this workshop and these tools for hospitals to get on board with to improve the bereavement care in their hospitals. This all came about in about March last year, and I saw a post on Facebook and it was, I think it was Bliss who shared it. There are lots of different baby charities that are included in this. Sands are the ones leading it. And Bliss shared this post and they were looking for parent voices to be included, to try and help share their own journeys and try and help develop this bereavement care. So because of our experiences and as I said earlier, the way in which the news was delivered to us that Pippa wasn’t going to survive, wasn’t handled very well. And so I wanted to try and get involved in this to ensure it didn’t happen again. And the more I learned about what this national bereavement care pathway was, the more empowered I was to to work with it. I wanted to be really involved with it because I thought that my voice and Pippa’s journey can make massive difference to these health care professionals. I’ve spoken at four, possibly four workshops, and they’re attended by people who are already on board with the National bereavement care pathway, or they’re thinking about it, to find out a little bit more about it. And so I share Pippa’s journey and get involved in some of the activities that happened on the day to share my experiences to help them improve the care in their hospitals. I’m actually speaking tomorrow in Durham, to another one. And I was at the transforming loss conference last week, which was hosted by Bliss, Sands and the Royal College of midwives. that was absolutely nerve wracking, about 300 people everything. But because of what I’ve done with the National bereavement care pathway, I know how important it is to parents like me and like Hannah and like so many other parents that we’ve spoken to who’ve been through baby loss, know how important it is for us to talk about our loss, to try and improve the bereavement care that everyone gets. Like I said, it’s so unfair that some parents will get the most amazing care, but some others get just absolutely terrible care.

Alison Ingleby 53:22
Yeah, I agree. And yeah, and thank you for for doing that work. And I guess being that voice of all parents who’ve suffered a loss, and and especially those parents who perhaps haven’t received the care and support that they needed and that they deserve. And so thank you, and I really appreciate you coming on to share Pippa’s story and talking with me today. Finally, would you just like to tell people where they can find out more about pipsqueaks and get in touch with you online.

Ian Twitchett 53:55
Sure, so the website for pipsqueaks is just wwwpipsqueakscharitycom. And just a little bit about who we are what we do, Pippa’s full journey is on there, there’s loads of little lovely pictures. And over time that site will just get developed. We’re hoping to have an old school type message board on there, so parents who are on the unit at the time, who are unsure of anything or want to ask the question, can jump on that board and we hope to build this network of parents who’ve been through a loss who maybe able to answer questions and then have some healthcare professionals who might want to jump into this and be a helping hand and give some sort of advice or little tips of how to get through that neonatal journey. And we’re on Facebook, Instagram, and Twitter, just type in Pipsqueaks charity. And our blog is Twinchetts. If you search for any of them on on social media, we’ll come up and you’ll get to see Pippa and our journey through life after loss.

Alison Ingleby 55:08
Brilliant. Thank you so much as I really appreciate you taking the time to come on the podcast