Danni & James – 10th Anniversary Case Study – For Bethan
If you are a newly bereaved parent reading this story, it is my wish that it is something that brings you a glimmer of hope. It is a story of transformation; one that begins in the depths of sadness but ends in a place of not just love and joy but a place where real life is being lived in all its forms.
I believe that, often, the death of a baby brings about a new perspective on life. Despite the intense heartbreak, there is something about this experience that can be transformative in all the very best of ways, and in ways that those lucky enough not to have shared this experience may never be able to fully grasp. But it is not just this that I want you to take from Danni and James’ story. I also want you to know that you will live a normal life again; you will not only feel joy again, but you will also be able to fully experience all the everyday mundanities of life.
And this is where I begin with Danni. When we log on to Zoom to have this chat, I find her in the dark depths of attempting to complete school application forms. We will go on to share the story of her daughter Bethan and there will be moments in this conversation where we connect in ways that are perhaps only possible between people who have lost a baby. But, it is here, over this most irritating piece of life admin, that we bond first
You see, this isn’t just a heartbreaking story about loss but one that sees Danni and her husband James creating a new family life full of love, full of frustrations, full of fun, full of satisfaction – a full life that I don’t think either of them thought would be possible following the death of their daughter Bethan who was stillborn in March 2015.
Bethan was Danni’s third pregnancy, and she tells me the pregnancy part of the story in just the sort of way that you would expect any mother to third time around – a very matter-of-fact quick rundown of something she had done before, something she trusted. Having had two very normal pregnancies and births she says: “I felt totally complacent; I’ve done this before and I knew what was coming. I was becoming an experienced mother.”
There had been an issue getting the nuchal fold measurement at 12 weeks and so Danni had a less reliable blood test at 16 weeks which showed a one in 250 chance of Down’s Syndrome, but the doctors involved calmed all their worries and the couple “sailed on with the pregnancy as planned.”
As Bethan’s’ due date came closer, Danni and James were doing all the things you would expect at this stage. Danni says: “I had a presentation scan five days before the 5th of March because Bethan was breech. Nothing showed up, everything was fine, and we were booked for an elective c-section as it looked like she wasn’t going to turn. So, we went home and planned for a normal arrival; nursery being sorted, organising the other two other children (Poppy was just about to turn 4 and Emma had just turned 2) and made those plans that we all do, doing the baby laundry, the nesting.”
Danni continues to tell me in this matter-of-fact way about the build-up to what happened next. She and James had had a silly disagreement about something she can’t remember, James had gone to circuit training and she has gone off to bed feeling very uncomfortable as usual because Bethan was breech. But then suddenly, we are not reliving a normal birth story… We are now reliving the build-up to the worst possible events. Danni’s tone changes in a flash, her voice cracks and the tears start to come as she remembers:
“I woke at about 4am, I don’t know why I woke up, but I just did, and I went back to sleep then woke up at the normal time with the other two. James had gone off to work. And I thought oh, she’s not moving very much. I got the other two up and dressed and thought, no she’s still not moving, this is weird, I’ll have a bath. Poked and prodded her and nothing – but not for one minute did I think that she had died.”
At this point, Danni called James and they went into hospital to get checked out but still not thinking the worst. When they got into the clinic and a heartbeat couldn’t be found they were initially told not to worry, it could take a while because Bethan was breech. But sadly this was not the case and Danni describes what happened next: “They wheeled in this big ultrasound machine and I just remember there was a big mirror in the room and I saw the expression on my face when I realised, and when the midwives realised, what had happened and I frightened myself seeing my reflection in that moment.”
They were then moved to another room to see a consultant. Danni tells me: “I couldn’t even look at the screen and the consultant just said ‘I’m really sorry, the baby has died.’ I instantly just said to her, ‘I can’t give birth, please don’t make me, I can’t do this’ and then you just go into this shock mode, and I didn’t know what to do with myself, what to do with my body, I hated, at that point, being pregnant. I just wanted the baby out; I just couldn’t bear this thought that she had died. I went to the bathroom and threw up and James was in total shock too.”
It wasn’t until they began phoning their family to tell them what had happened that it really started to sink in. Danni explains: “I heard peoples’ reactions – they were absolutely distraught and for me to hear them on the phone like that was really hard because they were frightened and you know, shock doesn’t even come close to it!”
Danni herself became overcome with fear at that point too. Through tears, she says: “You know when you are pregnant and you don’t really think about yourself, you just think about the baby and what’s right for them… knowing that she had then died, I instantly started to worry about myself and I was thinking I’ve got two other babies at home what if something happens to me and I genuinely thought that I could die – it was just a really overwhelming feeling that I could die.”
Because Bethan was breech, Danni was given a c-section and she remembers the moment Bethan was born; “I didn’t see her at first because I was frightened but they said there’s nothing wrong with her Danni you can see her. So, James held her first and he came to show me, and I just thought why isn’t she opening her eyes? She was really pink, and she just looked like a normal baby.
“It took ages to stitch me up and then they moved us to recovery and then I eventually did hold her. I did want to hold her, and I did, but it was uncomfortable because she was cold and didn’t have any tone. As much as you want to cuddle her, it was the most shocking thing because she wasn’t alive.
“James dressed her, family members came in and they did all hold her, but I was just like how on earth did we get here? How has this happened today? I just got up and thought it was a normal day and now, our lives have changed forever. It was so unbelievably life-changing, so unbelievably shocking.
“We stayed overnight and in the morning the hospital staff came in and were pushing every possible memory-making thing on us, which at the time was really difficult because I was just thinking please would you leave me alone, this is too much, but now, of course, that’s all I’ve got so I’m really grateful that they did that.”
Betham being bathed after her delivery
Following Bethan’s death, Danni and James went through some incredibly tough times. She is right when she says that in a moment their lives had changed forever, and the period of adjustment can be exceptionally tough for both the parents and those around them. Danni remembers the darkness and anxiety of this time: “You start this new life of people wanting to support but not knowing what to say, of looking after two other children. I couldn’t face people, I couldn’t do the school run, and I just wanted to isolate myself constantly. I was in such shock, even going to Tesco I just couldn’t get out of the car, and I remember having a panic attack in the Tesco car park. I rang James and said I just can’t get out of this car – what if people see me? You know the shame was just unbelievable and the guilt thinking it was all my fault.
“It was a very difficult first six weeks. I had to get up for the girls, I had to function for them but even the thought of doing a pre-school drop-off was just horrendous.”
She then goes on to tell me the most heartbreaking story about Mother’s Day which came barely a week after Bethan had died: “Pre-school had organised this mother drop-in thing for Mother’s Day where you go and do some craft and the children would make the mums a drink and a biscuit and I had promised Poppy that I would do it, so I did, and I can’t believe how I did it. I turned up with some sunglasses on and forced myself in and sat there, you know, head down just trying to focus on Poppy.”
Listening to her speak, I am blown away by Danni’s strength at this time and her overwhelming instinct to mother her living child and I am reminded of something that one of the Petals counsellors once said to me about why it means so much to her to work with mothers during these most difficult of times. She told me that, witnessing the true strength of a mother and being able to walk alongside her and reflect that back to her is a huge part of what makes her work a privilege – And it makes me feel so honoured that Danni is sharing this moment with me.
I ask Danni how she and James were coping at this time and how they got put in touch with Petals and her reply vocalises the fear that we so often hear from women going through this trauma: “When we were back at home I was just like, what do we do now? How do we move forward from this? I was terrified that James and I would end up splitting up because people get divorced after big life events, don’t they?”
Then her voice cracks and the tears come again as she remembers the fear and confusion: “I just kept thinking, is he going to blame me? Is he going to say he loves me but secretly is he going to think that it was all my fault? That he’s going to resent me and think that I should have done something?”
The couple initially tried peer support groups to help them through but for many reasons, including simple logistics, it wasn’t for them. They got back in touch with the hospital staff who thankfully, put them in touch with Petals. Danni clearly remembers what she said when she reached out to us: “We are in a terrible situation, we can’t cope. I don’t know how to live; I can’t do a day. I don’t know what life means anymore. I can’t make sense of any of this, and I don’t see how we can move forward. And they were brilliant, and before we knew it, we had our first session with our incredible counsellor Sue!”
Step-by-step, the counselling sessions helped them to come to accept what had happened and to see how strong their relationship was. Danni says: “Those sessions were literally everything. It helped us return to the hospital, which was so harrowing but, I felt like they (Petals) knew what they were talking about, they specialised in baby loss.
“One week we would go and I would be feeling a certain way and another week I would be cross at James for not grieving at the same pace as me or that he had returned to work and I would be seeing that he is getting on with his normal life while I’m stuck at home without a baby bringing up the other two thinking what did I do wrong? So, that counselling really did help us see that there wasn’t a problem with our relationship but that we were grieving at different times in different ways and that that was ok and to allow that to happen and that eventually, we would come back to be on the same page again.”
As is so often the case, it wasn’t just their relationship that struggled initially but also the relationships they held with family and friends. When you are dealing with the death of a child, the reaction of those around you can come as shock and feel like another burden for you to bear.
Danni describes this perfectly: “Family members who think they are saying the right thing end up saying the wrong thing and friends that you think are really close friends just don’t know how to handle this at all and they drift away. Then suddenly people who you don’t expect to be there for you turn up and they don’t leave and that was something that was really profound to us.
“Actually, our friendships really changed from that moment and that still remains now. The people who got it and understood us are still our closest friends now because what happened changed us forever and there is no going back. I see things very differently now, sort of pre-Bethan and post-Bethan of how we used to live and the people we used to be versus the people we are now, and Petals supported us all through that change.”
Following Bethan’s death, Danni describes her desire to have another child as almost overwhelming: “I was thinking at this point, I have to have another baby in my arms. There was just this unfathomable desire to hold another baby in my arms. My arms physically ached! It was just, I can’t tell you… it’s like nothing I’ll hopefully ever, ever feel again.”
Again, Petals was there to help them through this time which wasn’t as straightforward as just getting pregnant again. The couple had decided to have tests on Bethan, but it was a three-month wait to get the results. The tests eventually showed that Bethan had Down’s Syndrome which was not only a massive surprise to everyone, as she had not presented with anything that would indicate that, but also caused a huge amount of anger towards the hospital due to the conversations had following the 16-week blood test results.
James and Danni were then tested too to see if it was a genetic issue or just something that happened at conception and Danni describes: “The agonising wait to find out why and what it meant for the future.”
She continues: “We really used the counselling to help us get through those times. You know at this point the girls had started school and pre-school and suddenly I didn’t have any children at home and that made that longing for a baby even stronger.”
When the results came, it was good news in terms of being able to go ahead with another pregnancy and in the August of 2015, Danni was expecting again. Whilst this is what they had been longing for so desperately, Danni had lost all confidence in pregnancy and her own body and what followed were nine months of extreme anxiety.
In the initial stages of the pregnancy, Danni suffered badly from hyperemesis (extreme morning sickness) and her days became about surviving the symptoms. However, from 17 weeks, when the baby began to move, she describes her life as “relentless.” She says: “From that point, I was living on the edge, day and night, in a state of fear that we could go back to where we were at any moment; having to hold a child that had died, having to bury another child.
“I would drive to the Rosie in the middle of the night just to be put on a monitor and I would wake up shaking and in absolute terror that the baby had died again.
“Everybody around us was just like keep positive, you can do this, and I was like it’s actually nothing to do with me! I’m just a vessel – pregnancy is completely out of my control, and they don’t know that it’s going to be ok so stop telling me it’s going to be ok. Allow me to be terrified because that is the right emotion to be feeling!”
This is where the support of Petals became so crucial for Danni because Sue was the one person who could bear to hear her pain and hold the space for all these intense feelings. Danni explains: “Petals literally became a lifeline. Sue counted down the days with us, not knowing that this was going to be ok but being there in case it wasn’t. She was just able to be with us and say, if this isn’t ok Petals are not going anywhere.
“That they were there with us and knowing that I had a professional to look after me afterwards was so important. I knew that, no matter what, I was still going to be able to bring up my two healthy children and knowing that this wasn’t going to be the ending of me was everything. They kept our family together.”
Danni spent the last few days of her pregnancy in hospital being constantly monitored, but she says: “You get to the point where even the monitor isn’t enough. At this point, I had made no bond with the baby. It was just, is the baby moving or not moving? There was nothing ready in the house. I didn’t allow myself at any point to think I would be bringing a baby home. I refused to pack my bag or anything for the baby. I didn’t take anything for the baby to hospital at all. Even at the point of going to theatre, James said to me ‘this is really happening now, isn’t it?’ And I was like well it is but we don’t know that she’s going to be ok.”
Danni and James’ daughter Jessica was born safely on 6th April, just over a year after Bethan had died and very slowly, the couple began to build a new family life. Danni says: “It took me nine months of Jessica’s life to start feeling like a normal person again, where that state of anxiety had gone down from 100% to zero and to figure out where Jessica would fit in our lives and where Bethan would fit in our lives and in our hearts. Sue was fundamental in all of this, helping us form how we would talk about Bethan and how we would allow ourselves to enjoy Jessica.”
Jessica
The connection between Danni, James and Sue clearly played a crucial role in the couple getting through these harrowing experiences and Danni says: “We were so amazed at what they had done for us. By the time Jessie was eight months old, we had gone from seeing Sue as a couple who were completely and utterly broken to seeing Sue on my own with Jessie in a car seat – that’s how far we had come and that’s how close our bond was then with Sue.”
When I ask her when the real hope and appreciation for life returned Danni says: “I think the hope started again when Jess was maybe two – she’s coming up for six now. Bethan would be 7 now and every year on her birthday we do a family day out and we go to the cemetery and again on Christmas Day and Mother’s Day.
“But you know, Jessica is an absolute fireball and a cracker of a child, everybody says how she is the life and soul and how she lights up a room when she goes into it and they say, ‘isn’t she such a gift from Bethan’ which she is. She is our hope, she is such a joy.” And Danni and I are both crying now.
Keen to show their appreciation for what Petals have done for them, Danni and James have taken on many fundraising events and challenges over the last seven years from marathons to holding a charity ball, and all of us at Petals are eternally grateful for the money they have raised.
Danni describes it as: “a way to say thank you.” But when she speaks to me about undertaking the London to Paris cycle ride, I begin to understand that taking on these challenges has done so much for her too. She says: “I have never been a cyclist, but it saved me again, it gave me a purpose. Everybody was talking about Bethan all the time. People were so generous, and training was headspace for me too. And I had confidence back in my body again that it wasn’t going to let me down and that I had the ability to do these really challenging things – and it was all in her memory which was really special, and which gave me hope.”
James rocking his Petals t-shirt
As we come towards the end of our conversation, Danni reveals what to me is the most remarkable part of her story and is the thing that truly shows how far she has come. She had earlier told me that following Bethan’s death, she couldn’t stand to see a pregnant woman or even be near a buggy – she now tells me she has recently started a new job as a maternity support worker! She describes how this is something she had only dreamed about doing before and something that in the depths of her grief she thought could never happen.
She tells me how she worked really hard on her CV in order to secure an interview and how, out of 56 people who went for the role, she was the one who succeeded. It feels like a real turning point in Danni and James’ life and hearing her pride in herself is beyond heartwarming.
She says: “I’m still finishing my initial training right now. I’ve had a few wobbly weeks where I’ve thought can I really do this? There was a stillbirth on the unit, and I couldn’t really engage with the mum as she didn’t have good English which was a real shame. And there was another emergency on the postnatal ward where the baby turned blue, and I found that very challenging, especially as it was the week leading up to Bethan’s birthday, and I came home thinking, I don’t know if I can do this.
“But, since then I’ve been in the community and I’ve met some lovely families and lovely babies and I’m finding it really rewarding and I think to myself I’ve come a really, really, REALLY long way.” Then, through an enormous sob that, despite only being communicated to me through a screen, I physically feel in my chest, she says: “And I hope that Bethan is proud of me.”
I want to reach through the screen and hug her and tell her that there is no doubt that not just Bethan but Danni’s whole family are beyond proud of her. Before I get the chance to say anything she continues: “And it just absolutely wouldn’t have been possible if we hadn’t had the support from Petals – I know it sounds so cliché but IT’S TRUE! They are professionals, it’s a professional service, that’s what they do. You don’t go through cancer without seeing an oncologist and it’s the same, you don’t get through the loss of a child without some professional help.
“Petals have helped us rebuild our lives to the point that I can take this job, and to the point where I have reshaped all that anxiety and I’m not letting that define who I am. And actually, it has given me the opportunity to talk about Bethan even more.”
And I am just so glad that Danni has spoken about Bethan to me and allowed me to write it all down for you.
So, if you are that newly bereaved parent and have come to the end of this story, I want you to know that gradually, you too will be ok. It will ebb and flow, there may well always be moments of intense pain, there will still be tears, but there will be joy again and there will be all the other mundane feelings of life, too – boredom, frustration, happiness, worry. You’ll have moments of feeling proud of yourself, moments of feeling flat, but you will be able to put one foot in front of the other and there are people who can bear the pain with you. You will engage with day-to-day life again, it will be different, but it will be good, it will carry all your babies with it, and it will be yours to shape.
