I used to post quite regularly during heart month to try and raise awareness of CHD. Sharing our story to try and bring hope to other families or to raise awareness of research that might help other heart children. Sharing our experiences in Facebook groups to help other families going through similar experiences. I wanted to be able to help other families and to give them hope. After Jessica died, I stopped writing much about CHD. Our story was no longer a story that brought hope to others. And so I stopped sharing it.
Some time ago, I was asked to share Jessica’s story again. After I’d submitted it, I received a reply which said, “I’m so sorry, I didn’t realise that Jessica had died.” On one level, a simple message of condolence. But I also knew that it meant that Jessica’s story was no longer wanted.
We are the ‘club that no-one ever wants to join’; the side of CHD that many heart parents would prefer to forget exists. Our stories are often only shared in moments of remembrance and days that mark infant or child loss. A brief time for us to share our stories, and then we slip back into the shadows once more.
I used to share some of our experiences of Jessica’s heart surgeries when she was a baby to help others. However, I’ve not been able to do the same with her last surgery; her Fontan procedure. If someone posts a question in a Facebook group asking “did your child experience X after their Fontan?”, I can’t share our experience of that particular problem. Because what this question is really asking, what all these questions are really asking deep down, is “is my child going to be okay? Please tell me my child is going to be okay.”
No-one wants to hear that my child had a similar experience; not when she died three months after the Fontan. It doesn’t matter whether or not that particular experience might have had any impact on her death; the fact that she died is enough for my story to be terrifying. I can’t give them the hope they are seeking; I represent the fear that they try to forget.
It hurts sometimes that a community I was once part of is now closed to me in this way. That at the moment Jessica died, her story stopped giving hope to others. That even though she lived six and a half beautiful, wonderful years and lived as full a life as possible in that time, the ultimate message from our story is that she died. When you live with that deep-down fear that your child will not grow up, you don’t want to be confronted with the reality of children for whom that has been true. You want the hope of the ones that have reached adulthood, that are going to university, that are doing well.
No-one wants to be on this side of the heart family community. There are specific groups for those of us who are bereaved parents, of course, and while many of us are still part of the more general heart parent groups, we tend to be quieter there. Partly because our stories represent the fear that every heart parent lives with, and partly because sometimes those happier stories bring pain to us too. As much as I try to celebrate the milestones that my heart friends’ children reach, there will always be a part of me that feels so very sad that my daughter didn’t reach those milestones too.
Here on the dark side of CHD, in the bereaved heart parents community, there is love and support. We might not share our stories as easily, but they matter too. Our children’s voices are important; our children lived and were loved. Their lives had an impact; their lives mattered, and we need to have their stories remembered and their names spoken.
It might sound strange, but our stories can give hope too. When I first found out about Jessica’s heart condition and the prognosis looked very bleak, a former colleague messaged me to tell me about her daughter who was born with a heart defect, many years earlier. I knew she had lost a child, but I’d never known more than that. I felt touched that she’d chosen to share her daughter’s story with me, and the hope that since medical technology had improved so much; that my story might have a different outcome. The hope that my story might be different did help, but what helped me too was that quiet strength that came from a bereaved mother. A strength that gave me hope that should my worst nightmare come true, I could survive.
And here I am, nearly three years on. I won’t pretend that it isn’t agonizingly hard at times, but I have survived my worst nightmare and continue to do so each day. I miss Jessica immensely; there are moments where grief and the pain of having to live life without her is utterly overwhelming. But there are also many moments when the memories of life with Jessica brings smiles and laughter, and there are still moments of joy. Bittersweet moments of joy, perhaps, but moments of joy nonetheless.
Maybe it isn’t really that our story is an unwanted one. Maybe it is just that the focus of the story and the audience have changed. That instead of it being Jessica’s story of living with CHD, it is now our story of living with grief; of finding meaning in grief and being inspired by the strength that Jessica showed throughout her life. I can’t give hope to other heart parents as I once might have done, but I can help those who are living with child loss know they are not alone. And while Jessica’s CHD journey itself may no longer give hope, the book that I wrote for her to help prepare her for her heart surgery still helps other heart children who are about to have surgery.
Earlier this week, I shared a photo of Jessica on Instagram with a short summary of her story. That photo is one of my favourites. As is the case with many photos of Jessica, she is smiling her beautiful, radiant smile. A smile that is full of so much joy. A smile that clearly shows why her godmother once called her a “joy carrier”. One of the comments on that photo touched my heart. Five simple words: “Beautiful Jessica – still spreading joy”. It means so much to know that my little girl, who spread so much joy in her life, is still spreading joy to others nearly three years after her death. Jessica’s legacy is joy. And part of her continuing story, and my continuing story, is about finding that joy and sharing it with others. Not such an unwanted story after all.
Louise, try not to feel as though Jessica’s story is unwanted. I looked after her on Ocean Ward when she was a tiny baby, and following her early surgeries.
I relocated back to the midlands nearly 5 years ago and now work on a PICU, but I think of Jessica (and so many of our heart warriors) often. The journey as a heart family is one that never ends, even when the unimaginable happens. The strength your family have shown over the years will have helped, and will continue to help, more people than you know. Jessica fought with a determination and bravery that is humbling beyond words. Please don’t stop telling her story.
Thank you so much, Anna. I’m so thankful for all the wonderful care that you and the rest of the Ocean Ward team gave to Jessica. Thank you too for reassuring me that her story can still help others. I started off writing this feeling that her story had become an unwanted one but writing it out did make me realise that perhaps this wasn’t true after all, hence the question mark in the title. Hope you are keeping well and safe and thank you for all you are still doing to help poorly children and their families xx
Jessica will always and forever spread joy and her name will always be spoken. I feel so heartbroken for you and I hope that you always keep sharing your life with and without her. Sometimes life is cruel and loved ones taken far too soon, but that doesn’t make your story less relevant. Yes, I understand how some parents might not want to hear about it when their child is so close to the line that Jessica crossed, but there will others that find comfort in the love that continues and your story is just as important. Sending much love xx
Thank you Anne. It is so hard when our experience is just a little too close to that line to be comforting, as I feel our Fontan experience is, but it does mean a lot to know that our story can still help others x
You telling Jessica’s story has given me so much hope on dark days. She really does still spread joy and a little piece of my heart is just for her, even though I never got the privilege of meeting her. That’s the power of telling somebody’s story ❤️
Thank you Emily. I’m glad that Jessica’s story has helped to give you hope. I think all the heart angels we encounter have a little place in each of our hearts. I know that Etta’s story and her photos captured a little piece of mine too xx
I never got to meet Jessica, and we haven’t seen eachother in a couple of decades, but that doesn’t mean she hasn’t touched even my heart. I had Jessica in my mind when I applied to work at the NHS nearly 4 years ago as her story, being operated on before she was even born, that there was just one place she could even try, it was just so inspiring and to think I could in some way be part of that…
She was truly a little miracle and seeing her grow and go so far beyond where they thought she could reach continues to give me faith in the NHS. Every groundbreaker like Jessica helps give hope to others, gives other surgeons a trail to follow, a treatment to refine, helps it go from “Never been done before” to “I did hear of a case where…” to “we’d like to support wider training on this procedure” to “don’t forget your annual refresher training!” and so on.
I wish you could have known her for longer, but I hope that you know that to a parent somewhere who just had that prenatal scan and been told their child is like Jessica, she is still spreading hope, and joy, because she did not just survive, she truly lived, and will continue to help others to do so.
Thank you so much Jenny. I love that Jessica helped inspire you to work in the NHS and that the story of the amazing ground-breaking care she received helps give you faith in the NHS too. That’s a good point that the groundbreakers help carve the trail for others to follow and therefore continue to give people hope. It means a lot to know that Jessica’s story does still spread hope – and yes she did truly live and lived life as fully as she could have done in those six and a half wonderful years that we were blessed to have her here with us x
Louise,
There are many voices telling us that we can be and do and have whatever we want, and trying to put a positive spin on events. So perhaps it isn’t surprising that some people now prefer to distance themselves from Jessica’s story.
Difficult situations reveal people’s character. Anna D, Anne, Emily and Jenny, plus many others I’m sure, are still interested in Jessica’s story and the story of all five of you. Those stories, and the stories of other heart children and parents and siblings (today I heard for the first time about Etta and Emily), are as important as ever.
Thank you. I do understand why some people prefer to distance themselves from our story but it is reassuring to be reminded that our story is still important and there are still people who are helped by hearing it.
I had totally forgotten about heart month until I saw one of your tweets.
It is so sad that Jessica’s heart story didn’t have a happy ending but there is so much positivity to come from her story especially when her prognosis was so bad to start with.
Her story is not unwanted and such an inspiration to many including me.
Sending love and hugs.
Thank you Kim. We’ll always be so thankful that we got those six and a half years – especially given at the start that we weren’t even sure we’d get any time with Jessica. It means a lot to know that her story still helps inspire others.
Never stop telling Jessicas story, she brought you, your family and others so much happiness and joy. Thank you for linking with #pocolo
Thank you so much. She certainly did bring us a lot of joy.
Spreading joy is such a great legacy to have, her smile’s so contagious. Sending love and fab to have you with us at #PoCoLo
Thank you Stephanie, she really was such a little joy carrier.
Dearest Louise,
My name is Kyram. My only daughter Mirabelle died in my arms at home from hlhs heart failure March 25 2021. I love Jessica and love you and want you to know you’re not alone . I understand you so much. We are on the dark side of CHD. I would love to hear from you if you want to. Here is a very short video about mirabelle https://m.youtube.com/watch?v=d2jlyxvhPos
Dear Kyram, thank you for sharing your beautiful Mirabelle’s story. The photos of her on the video are so beautiful. I’m so sorry that you are also on the dark side of CHD too and understand this pain too. It is so important for us to be able to share our stories too – as you say in your story with the video, there are no guarantees and not all children survive to grow up, and it’s important the people are aware of that too. Sending much love to you and thinking of you beautiful Mirabelle with love x
Hearing from you was a very beautiful surprise Louise. Thank you so much for watching her video and reading her story. I agree i think as long as there is no cure, parents still deserve to catch up on knowledge and make an informed and educated decision. When Mirabelle was born and her HLHS was discovered, I wasn’t even given a choice. Instead, I was made to sit down, they explained to me she was born with half a heart, I was in so much shock they let my mom in, sat us both and I translated to her what they told me, and very suddenly they whisked her away so fast, they broke my heart. This choice was taken away from me. I followed along, placing my hope in doctors. I fought for her while not even being able to recover from the 30 hour long labor I endured to deliver her.
As long as there is no cure yet I think both the communication between doctors and parents needs to still be inclusive of comfort care and also, a protocol for HLHS Single Ventricle Surgical Palliative path needs to be further refined. For example, someone like mirabelle born with a defective single right ventricle and completely absent left side valves should be excluded if not, made known to be unlikely a fit to survive the surgeries, while some other child with mild HLHS (like borderline left ventricle) could just just go to boston
s children hospital and get their small left ventricle rehabilitated. I was also treated very poorly by nurses in the hospital mirabelle was flown to. They assumed I was dumb and didn’t know anything, also some were rough with Mirabelle, and rude or insensitive with me, but I was already looking up the genetic components that sometimes cause HLHS like defects in NKX2-5, SAP130 etc. In any case. I wish we didn’t share this pain. I was wondering what you do to feel better in days where missing Jessica is unbearable, like your chest has a jessica-sized hole that bleeds and you can’t stop the bleeding? Also, would you happen to know how these ideas about refining the patient category for single ventricle palliation be brought to the attention of people who make the decisions, or who or how these decisions are made? Jessica and Mirabelle and other angels may not physically be with us but I believe improvements could Definitely be made for newly diagnosed and I would like to propose changes to treatment to a committee. Please feel free to talk to me anytime. We deserve to have a voice. I do not like going to websites about HLHS and finding overrepresented positive stories while they brush us under the rug. I send you much, much , much love, and I know nothing makes it better but I understand you.
I can imagine that must have been a huge shock especially feeling that any choice was taken from you when Mirabelle was diagnosed. We had time to prepare in some respects with Jessica as we found out at the 20 week scan. We were given the option of comfort care and termination as well as the surgical pathway which was the route we chose. Jessica did have a more complicated anatomy as she also had a restrictive atrial septum but we were given a chance with in-utero surgery to help improve the odds for her. I do agree that good communication is very important with all medical staff and I’m sorry that the nurses treated you poorly. On the days when that pain of missing Jessica is unbearable, I tend to allow those feelings to come and cry as much as I need to, and sometimes visiting her forever bed or just sitting and chatting out loud to her helps. With regards to helping improve things, I’ve worked with a few charities here in the UK during Jessica’s life and since her death to help raise awareness, particularly with regards to research which can help improve surgical treatments for HLHS. One particular charity that I worked with before Jessica’s death still shares her story regularly and it means a huge amount that her story can still make a positive contribution. Sending you much love too. It does help knowing others understand x
I am so sorry to spam your page I just feel so excited to hear back from someone like me after so long, but I also wanted to say Jessica is so very beautiful and I love how cute she looks with the superhero cape and heart on her left eye, it warmed my heart. And she’s definitely eternal in so many ways, touching lives and hearts to this day and beyond. I showed jessica to my dad when I was crying over mirabelle again and he said she is an adorable little girl. I feel a very powerful connection to hlhs kids and their families. One day we will be reunited with our angels for sure.
No problem with posting on my page, it’s good to be able to talk and to share with another heart parent who understands. If it’s easier, you can also message me on my FB page or email me directly (louise @ littleheartsbiglove.co.uk). The superhero cape was made by a friend of mine and Jessica wore it for a superheroes day at school. It seemed appropriate just to be herself as she was a superhero in her own right. I believe that we will be reunited with our angels too – that one day you will get to hold Mirabelle again just as I will get to hold Jessica xx