Finding hope after childloss

Episode 08: Finding Hope – Sudden Death, Organ Donation, and Fi’s Legacy

 

 

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This episode is dedicated to Fi ♥.

Episode Guest - Vicki Caldwell

Vicki is an OU regional Social Work academic. Following the sudden and unexpected death of her daughter in March 2016, Vicki has become interested in ‘active grief’: activities that don’t make your grief heavier and can help with finding a new way of living with hope following a loss. Some of Vicki’s active grief strategies have include developing learning resources around end-of-life experiences, organ donation and the grief that follows. Other active grief strategies include involvement in community-based activities that have been inspired by her daughter’s memory.

Vicki is the founding Trustee of FEES Fund an education charity set up in memory of Fiona Braidwood awarding grants so young people can take part in enrichment activities. Vicki has shared her experience of organ donation in support of NHSBT ‘Leave Them Certain’: a public awareness campaign. The recent law changes to opt out in most parts of the UK means families remain at the centre of the organ donation decision-making process. Families are now approached to support organ donation if no objection decision has previously been registered.

Vicki is a member of the Open Thanatology research group, North Bristol organ donation committee and an active member of NHS Blood and Transplant (NHSBT) ‘National Donor Families advisory group’. Vicki’s interest in organ donation and transplant services remains focused on ensuring donor families have a strong voice within research, policy development and shaping service improvements in both end-of-life hospital care and bereavement aftercare support.  

 

Vicki

Summary:

When Vicki’s daughter Fi was involved in a road traffic incident, her parents helped to enact her wish to become an organ donor. Vicki talks about that process, and how she finds ‘active grief’ allows her to pursue a happy and fulfilling life without taking away from the sadness of losing Fi. She also tells us about how Fi continues to drive some amazing things that are done in her name, mainly relating to FEES Fund. 

For more information about the Donor Family Care Service, click here.

You can find all about FEES FUND here

If you fancy trying open water swimming, Swim England will  help you find a local venue

Vicki has also written about her family and their wider losses and stories of survival, and you can find details here

Resources:

Organ donation in the UK and Ireland

To find out about organ donation in England, click here.

To find out about organ donation in Wales, click here

To find out about organ donation in Scotland, click here

Northern Ireland click here

To find out about organ donation in the Republic of Ireland, click here

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Episode 8 Transcript:

Debbie Enever, Host

Vicki Caldwell, Guest

[00:00:00] Hello, this is the Bereaved Parents Club podcast. It’s the club none of us want to be members of, but here we are. My name is Debbie and I’m a bereaved parent. This podcast is for all of us to share and celebrate the stories of our children and offer support to each other. Each episode, we’ll explore topics that have relevance to us as we navigate the world as bereaved parents.

Whether your loss was last week, last month, last year, or even last century, you are welcome here. And whether your child was a baby, a youngster, a teenager, an adult, or even a parent themselves, you are welcome here. Please be aware that each episode will deal with themes of death and loss.[00:01:00] 

Finding Hope, a story of sudden death, organ donation, and Fi’s legacy. 

Welcome to our final episode of Series 1. Today’s subject is close to my heart, as my son Dan was an organ donor, and it’s such a rare and special thing, that it’s not often I get to hear firsthand the stories of other parents of children who’ve also become organ donors.

For context, only 1 percent of people in the UK die in the kind of circumstances that allow organ donation to take place, And I’m sure we’ll touch on that again as we go through the episode. So, let’s get started. Today I’m joined by Vicki Caldwell. Vicki is going to share with us her story about finding hope after losing her beautiful daughter Fi in 2016.

She’s more than capable of introducing herself and telling her own story. So Vicki, welcome to the Bereaved Parents’ Club podcast. 

Oh, thank you, [00:02:00] Debbie. And thank you for asking me to be a guest on the program. As you mentioned, my name’s Vicki Caldwell. In 2016, my daughter, Fiona Braidwood, died suddenly and unexpectedly in a car accident at the age of 17.

She was in the really very rare position that she could become an organ donor. I recognize my experience might be hard to hear, but I hope rather than sadness, my contribution to this podcast brings a recognition of the personal growth that can come out of difficult circumstances and that it is possible to survive and thrive after a much-loved child’s death.

I believe Fi would approve of me sharing her story on this podcast and the positive impacts this might have for others. 

Can I ask you now to tell us a little bit about Fi? What was she like? 

Oh, wow. I love talking about Fee. She was my daughter and middle child and oh gosh, she was amazing. [00:03:00] She was beautiful, clever, talented in so many ways.

She was full of energy and very sparky and you knew she was present. She had such a strong personality that she was full of life and really positive about the future. She was just about to sit her A levels. She had gained really impressive GCSE results all at A and A star level. She was academically bright, she loved learning and she had ambitions after university to work in government and help shape public policy. She was going to have an impact. 

And what mattered to Fee? What were her values? 

One of the things that she felt was important was organ donation and it was one of the causes that she followed, she had such a strong value base and moral compass, she was very much grounded in principles of social justice and equality. Like lots of young people, she was a keen [00:04:00] user of social media and followed the causes that she felt were important, and she sort of encouraged and wrapped other people into those campaigns. 

On her bedroom wall, there were quotes of all the things that she felt were important. And some of the things that sort of she had on her wall were that you needed to ‘stand up for things that you believed in, even if your voice shakes’, and that we can all make a difference and we shouldn’t leave it to others.

Fi wanted to live a life that mattered and live a life worth writing about. So it sometimes feels like she handed over an important baton to her family and friends and the people that she continues to touch after her life. And Fi’s inspiration is an important theme that very much shaped our decisions around organ donation and our grief experience since afterwards, and in creating that living legacy, you know, where we keep Fi’s memory very present. 

She sounds so lovely, she really does. Are you okay to share with us [00:05:00] what happened to Fi? 

Yes, of course. Um, so the day started like any other, but the headlines are, she was involved in a car accident very close to home in which she sustained a serious head injury.

She was treated at the scene and was then airlifted to the regional trauma centre. The assessment at A& E confirmed devastating brain injuries and the news that her head injury was not survivable was shared immediately when we arrived at the hospital. And Fi was then transferred to the intensive care unit and we were given space to process what we were being told and we spent a very precious day and night with Fi watching her life slip away.

That sounds like a very traumatic event and something that is difficult to process in the moment. So, tell me about how things were at the [00:06:00] hospital for you. 

Gosh, um, I think what I’m just so grateful for is that Fi did get to hospital. She was airlifted to the hospital. And what we learned later was that actually Fi’s head injury meant that she did die at the roadside.

But the fact that she was airlifted meant that we could spend time with her at the end of her life. The kindness and care that was shown to Fi and the family centred care, so compassionate that we received at the hospital. And gosh, it was so appreciated. At all times, the medical staff explained what they were doing.

And how was ICU in particular then? 

It feels very strange to say it, but the ICU unit felt like a very calm environment. It is a very clinical environment, you know, compared to the emergency department. Which isn’t, uh, an [00:07:00] environment to spend quality time with a loved one and to be able to process the very difficult circumstances following Fi’s accident.

So, the time we spent in the intensive care unit was probably less than 12 hours, but it didn’t feel rushed. And my memory is of calmness, of being with Fi, being involved in her care and, of course, being together as a family. We really valued the very simple, clear and consistent messages that were shared with us by the doctors and nurses as Fi was passing through the hospital.

And this helped us to hear what was being said. Our understanding was regularly checked, with what you understand is happening now. Because it is like no other time in your life. You’re not processing information in the same way as you would in any normal situation. I loved how Fi was kept at the centre of the care and we witnessed [00:08:00] and saw her receiving such high quality end of life care.

And in between the medical updates, we were spending time with Fi at her bedside. We were observing and witnessing the realities of her injury. So we were told how poorly she was and how serious her head injury was. And we were watching her deteriorate throughout the day. So it didn’t come as a surprise to know that Fi was dying.

And I hope some of these examples just show the impact of, of high quality care and support to families facing such difficult and traumatic experiences and why it’s valued at the time, but also afterwards when you revisit that trauma and try and make sense and process what you’ve been through.

Yeah. I found that the immense care and respect that was given to Dan and me and his dad by the ICU team really helped me to feel that we were [00:09:00] involved. I know that they often felt that I was told something which I understood at the moment that they were telling me, but then I promptly forgot it a second later. And they were all really patient, going over things, checking I knew what I was doing. 

I know Fee went on to become an organ donor. So would you tell us more about that and perhaps explain a little bit around the consent process for organ donation? 

Yes. So, um, there’s currently about 7, 000 people on the UK transplant waiting list. And over 400 people die each year waiting for a transplant. But since Fi died in 2016, the law has changed around organ donation in all parts of the UK. And they’ve changed to an opt out system. And this legislation’s aim was to try and increase the number of potential organ donors available for transplant.

But it’s really important to emphasise that families remain at [00:10:00] the centre and so, you know, families are always approached and asked to confirm the consent around organ donation. So it’s really important that we have conversations in life about our decisions around organ donation and it is a choice as well.

But having those conversations is so important. And that was something that really did help us knowing with certainty what Fi’s wishes were. 

Yeah, I think it’s important to emphasise that families are still at the heart of the decision making and it’s incredibly helpful to know that you’re doing exactly what your loved one wanted to happen.

Will you tell us a little bit about how it was for you and the family enacting Fee’s wishes? 

Yeah, so Fee had passed on so clearly that we had certainty so it didn’t feel like we were making a decision. The discussion around organ donation wasn’t rushed and was introduced at a time we could cope and were ready.

I think we were asked, were we aware that Fi had [00:11:00] placed her name on the organ donor register? And then we were guided through the process with sensitivity and compassion. So, the transplant process was explained and of course that it might not be possible. As you mentioned in your introduction, a very small percent of people die in circumstances where they can become organ donors.

So, for example, the coroner might not have agreed to it, or if at any point Fi became unstable throughout the day, and she needed treatment, it could potentially have made her organs unsuitable for organ donation. I think at a point in the day when I’d accepted that Fi was dying or had died, that the chance for organ donation became a really important focus for us as a family.

And to be honest, saying yes to organ donation, I think was probably the only easy thing that happened on that truly dreadful day. At all points, we felt in control and at the centre of the decision making, and [00:12:00] it felt like the specialist nurses and the medical professionals that were guiding us through a process that they were familiar with, and that felt really reassuring that there was expertise and professionalism. And as a multiple organ donor, Fi’s donation went on to save the lives of four people, which is just such an incredible legacy.

And it’s something that we continue to be immensely proud of. And even though, you know, eight years on, we’re still adjusting to a new way of living. And the sadness continues, but never with any regret around saying yes to organ donation. And there is incredible warmth and security in that knowledge to have done the right thing by putting into practice those final wishes.

It’s a powerful legacy after a horrible tragedy. Thanks ever so much for sharing the experience at the hospital. 

You and I both know that’s not the end of the story. So let’s pick [00:13:00] that up again. You spent time with Fee at the hospital. She became an organ donor and then finally you have to go home. What comes next? How do you adjust to this new life? Where do you find support? 

Oh gosh, I think that is probably the hardest thing, isn’t it? That, um, you know, how do you leave the hospital? How do you adjust? And I guess does consenting to organ donation bring comfort or does it create complications? Add complexity to the grief?

I think the reality is that, and all families are different, and we all have different needs and experiences. And I think the real skill in providing bereavement and aftercare support following organ donation is to be guided by the family and supporting them to make sense of what they’ve experienced when they feel ready. And providing support in helping them to find things that bring comfort and [00:14:00] with the life adjustments that they now face. 

Obviously, child loss is devastating for everyone. And I also know you weren’t the first generation in your family to experience this. Can you share a little of that aspect of your story? Because I think it’s quite enlightening and hopeful. 

Yeah, I grew up in a family that also experienced the loss of my brother. I was two years old when my brother died. So, I guess I had experience of child loss and I guess I knew that it was possible to survive and thrive and that sadness can sit alongside joy and that those things are possible.

And I also think that what my parents taught me was that life is for living and, you know, I guess it’s that superpower, isn’t it? It helps you focus in on what’s important in life. And I remember both my parents had [00:15:00] died by the time Fi had died, but that power in the hospital thinking, gosh, I know I’ve got this. I know we can, we can do this, you know, and I guess learning from the examples that were set by both my mum and my dad and my, you know, the family, that the love that surrounded us as a family, it would be possible. 

Vicki, I know from our pre-recording chat that you have written about your family, especially your dad and his influence. And I’ll make sure that we signpost readers so they can find out more. Details will be on the episode listing and the webpage. I don’t mean to sound too cryptic, but this is like a bonus story that I think readers will find inspiring, so do have a look. 

Also, in our pre-record chat, you used a phrase that I’d like to ask you about now. You talked about active grief. So can you please explain what that means? 

Yeah, so I guess it’s an [00:16:00] acceptance of what’s happened, a realization that I could move forward with hope and that joy could sit alongside that sadness, and trying to find a focus that has felt meaningful and can bring comfort while not denying the pain is the way that I’ve tried to shape my grief experience.

So I guess it’s that. Leaning in, I can’t change what’s happened, but I can take some of the positives from the sadness and try and work with that one step at a time, you know, and it does take time. I mean, there’s been lots of small and large things that have helped me move forward. 

And now then is the time for you to perhaps tell us about two of the most significant acts of active grief: Fi’s organ donation legacy and the charity that is set up in her name. Can we start with Fi’s organ donation legacy story? 

Yeah, so one of the first things that happened was that Fi’s cousin made a short film sharing Fi’s organ donation story. [00:17:00] It was part of a university project that he was working on. And it coincided with when the law had changed around the opt out, and he returned to the hospital and interviewed the staff that had cared for Fi, and helped to digitally document our experiences on that day. And quite quickly after that, other initiatives followed, that we had the opportunity to start celebrating Fi’s gift of organ donation.

So, Fi has a wall plaque at the hospital where she died. We attended the St. John’s awards ceremony and received Fi’s certificate and medal that acknowledges her gift of organ donation. And I’ve also been asked to represent the perspective of donor families at local and national committees. And I’ve got involved in advisory groups and I’ve also started talking in the community and in media events, helping [00:18:00] to raise the awareness of having conversations about organ donation, and making your own decisions known and these opportunities just help me to feel more confident in starting to articulate our experiences of organ donation and in sharing my story so that others can learn from that exchange. 

I’ve also joined the organ donation committee at the Children’s Hospital. And it’s really special to have our children’s contributions and our family experiences so valued by the professionals. 

Let me ask you about the charity now. It’s called FEES Fund, but what does that mean? 

So FEES Fund stands for Fees Enrichment Education Support Fund. And I guess it’s another positive that has come out of the sadness and the ripple effects that it can have.

We actively fundraise and then we give out grants to children where there are financial barriers so that they can [00:19:00] take part in enrichment education activities. So, all those things that make learning fun and enjoyable, school trips and music lessons, dance lessons. You know, we’ve funded a whole range of different things and what we aim to do is inspire a love of learning and help young people to nurture the talents that they’ve got and create opportunities that wouldn’t have been possible without the funding.

So yeah, there’s lots of information on the FEES Fund website and it also includes information about her organ donation legacy as well. And most importantly, how to apply for a FEES Fund grant as well. It would be lovely if people listening, you know, and know young people that would really benefit from the boost or a lovely activity and money’s a bit of a barrier at the moment, you know, please sort of, apply for a FEES Fund grant. Hearing the [00:20:00] impact of a FEES Fund grant and the opportunities, it’s just a wonderful boost of keeping Fi’s memory very present. 

What a gorgeous idea. Links to FEES Fund will be on our pages, so do check them out. Vicki, thank you for telling us about that. You earlier used the word ‘baton’, feeling like Fi passed on a baton to you and the family and I have to say it feels like she’s been handing batons out to lots more people through your work, raising the profile of organ donation and the brilliant opportunities that FEES Fund has enabled. It’s all very inspirational. 

And Vicki, you’ve been very generous sharing your time and your stories. Are there any key messages of support and hope that you might like to share with listeners? 

I guess I get my inspiration from Fi, her determination to live life to the full, to be happy and to have an impact. And I guess that has, has really helped me as I’ve [00:21:00] grieved for her not being there. And I think, you know, there’s lots of things that I’ve learned over the eight years. I think for me, time. It’s possible to survive the worst and create a future with hope following loss, but it takes time and it’s slow adjustments and it’s only when you look back that you can see that time has helped.

For me, it’s really important to keep Fi’s memory strong and my relationship with Fi strong and I keep her memories very close. I don’t want her ever to be forgotten. I want to continue to seek out opportunities to talk about Fi, celebrate her many talents and her life achievements with others and that doesn’t make my grief heavier.

I think support has also been really important. I have needed to develop an extensive support network and [00:22:00] have relied on family, friends and the communities that knew Fi and are also missing her. So many people had reached out and provided support. And reduced my sense of isolation since she died. And I’m just so grateful to each and every one that has joined me on my grief journey.

And I’ve needed all of that support, and I’ve asked for that support as well. Um, I think maybe a little bit like you, Debbie, I used a regular journal to help track my grief experiences. And it’s helped me recognize my different grief responses at different times. And using a reflective journal has helped me to make sense of, of what I’m going through and has helped provided a sense of control because you feel out of control, you know, in the depths of grief and it has been an amazing gift to myself that I can read back and see how I have survived, [00:23:00] thrived and almost you think, gosh, how did you do that? You know, at that time when you’re remembering, and I think that has really helped me feel strong and recognize that gosh, anything is possible. That if you survive that you can survive anything, you know, you. You stop sort of sweating the small stuff don’t you?

And I guess the other bit is the kindness, the kindness of others following a traumatic event is just so humbling. I will never forget that the outpouring of love and support we experienced after Fi died and during the years that have passed. They say it takes a whole community to raise a child, but in my experience, the same is true to grieve the death of a child, and those small acts of kindness really have impact.

Yeah, I think lots of parents will find your words resonating with them. The need for time to pass. The help that writing it down can [00:24:00] provide, simple acts of kindness from others, we all need to find our ways through, don’t we? Is there anything you want to add to conclude yours and Fi’s story? 

I suppose I’d just like to just end with, um, you know, I’ve mentioned Fi’s wall plaque at the hospital where she died, and it is in a really lovely, calm part of the hospital. And it surrounds a beautiful piece of artwork that brings the voices of transplant recipients and donor families together and shows that unique bond, the ripple effects of, of organ donation. It just feels like a really special community. I feel held by recipients and their stories and, and hearing the impact of that gift and, and that it has for individuals and their families.

Just to confirm, the plaque and artwork is at Southmead Hospital, North Bristol. And thanks for those words about continuing bonds. I think that relationship between donor [00:25:00] and recipient is really special, as is the continuing bond that we have with our children. 

And we don’t often hear the voices of bereaved parents, do we? It’s almost like, as a society, it’s like, oh, that’s sort of dangerous information, isn’t it? But, you know, and I think, you know, what you’ve created, Debbie, is the opportunity for people, for bereaved parents to have a voice and to be able to tell their story as they want to. I’m really grateful for this opportunity, um, to share Fi’s legacy and my experiences of what was a very traumatic, uh, death and, and the organ donation experiences as part of the series. Thank you. 

Oh, it’s my pleasure. It really is. And it leads me on to the final section that we feature in each of our podcasts, which is where we have a moment to reorient ourselves to the day and ask our guests to tell us something they’re grateful for, preferably something a little light-hearted. So Vicki, have you got [00:26:00] something that you’re grateful for today?

What I am so grateful for is that I’ve discovered cold water swimming. And it’s just been joyful. Yeah. So I’ve loved swimming outside, the friendships and the communities that have developed around that love of cold water swimming. And I’m grateful that the weather’s getting warmer and it’s getting easier to get in the water.

Oh, wow. That’s really impressive and a wonderful thing to be grateful for. Maybe you’ll also inspire some of our listeners. So thank you again, Vicki. 

That was my chat with Vicki Caldwell, Fi’s mum. For more information about everything we’ve touched on today, please see the episode listing and the Bereaved Parents Club website at www.bereavedparentsclub.org.uk

We’ve covered organ donation, FEES Fund, open water swimming, and don’t forget about the bonus story about Vicki’s family. I’m not saying any more, you’ll just have to follow the links. 

Well, club members, I hope that this final episode in the series [00:27:00] has helped. Please do share your thoughts on our social media pages or email me at hello@bereavedparentsclub.org.uk with your comments, feedback, and suggestions for future episodes. And please do share the podcast amongst your networks so that we can reach everyone who might benefit. 

Finally, if you want to know more about my grief journey, you can find a link to my book, Midowed:AMother’s Grief, on our webpage.

Thank you for listening. 

Today’s episode is dedicated to Fi.