This week (2nd – 8th December) is National Grief Awareness Week – a week which aims to normalise grief and get people talking about it. Many people feel uncomfortable around those who are grieving and it’s all too easy for grief to become a topic to avoid. I have always tried to be open when it comes to grief and to share some of my thoughts on having to live without my beautiful Jessica. This week, I’ll be focusing on sharing my story and Jessica’s story and sharing some reflections on the reality of living with grief to help raise awareness of the importance of talking about grief and having space to remember our loved ones.
This is the story of my beautiful brave girl, whose half a heart overflowed with love.
Jessica was born with a complex congenital heart defect (CHD) which was picked up at the 20-week scan. When we went for our scan that morning, we were excited about seeing our baby on screen. We left having had our world turned upside down after being told there was something wrong with our baby’s heart. The left side of Jessica’s heart was small and underdeveloped, leaving her with effectively only half a working heart, a condition called ‘hypoplastic left heart syndrome’ (HLHS).
At 22 weeks we received further devastating news. We were told that Jessica’s heart condition was so severe she wouldn’t be suitable for surgery after birth. We prayed for a miracle and a few weeks later were given a glimmer of hope. Jessica underwent pioneering in-utero surgery at 28 weeks’ gestation to open up a hole in her heart and give her a chance to survive. Throughout the rest of my pregnancy, we clung to hope and tried to enjoy all those little kicks and wriggles as much as we could, knowing that the future was so very uncertain.
I will never forget that rush of joy on hearing Jessica’s first cry when she was born; the relief that she’d made it to birth and we’d been able to meet her. We were able to have brief cuddles with her before she was taken to intensive care, and had her first open-heart surgery later that day. A week later, she had another heart surgery. Those early weeks were an anxious time for us, but full of joy too. We were so thankful that Jessica was here and recovering well from her surgeries. At four weeks’ old, she was well enough to come home for the first time.
We were in and out of hospital during that first year of Jessica’s life. We spent our first family Christmas in hospital as Jessica recovered from heart surgery once again. In spite of all the worries, it was still a magical time. Jessica was here; we were together as a family, and that was the best Christmas present we could have wished for. At Easter, we were back in hospital for yet another surgery. Jessica had a bumpy recovery from this one, but after she came home, we were able to relax a little as the next planned surgery would not be for a few years.
For the next few years we enjoyed a fairly normal life. Jessica had regular cardiac check-ups and a few hospital stays throughout this time but on the whole she was a happy and fairly healthy little girl. Her godmother once described her as a joy carrier and this described her perfectly. She was a wonderfully smiley little girl, who brought sunshine to all who knew her and whose half a heart overflowed with love.
When Jessica was two, her heart-healthy little sister Sophie was born. Jessica adored her baby sister. It was wonderful to see the close bond that they shared. They had so much fun together, often lost in their own little world as they played together happily. The future was still uncertain though with Jessica’s next planned surgery starting to loom on the horizon as she got older. We learned to live in the moment and enjoy it; not letting the fear of what tomorrow would bring take away the joy of today. At Christmas 2017 we told the girls we were expecting another baby. Jessica was so excited.
A couple of days later, Jessica had her final planned surgery – the Fontan procedure. She recovered well from this and we were hopeful that we could look forward to a few more years of normality without the prospect of surgery hanging over us. Sadly it was not to be.
Jessica returned to school at the end of February. In March, she became unwell with a cough and cold virus. For the next few weeks, we were back and forth to the doctors and paediatric assessment unit as she struggled to shake it off. Her energy levels dropped dramatically. She had moments of perking up and seeming to improve but would then become unwell again. She spent three days in hospital in April and came home on 12 April with a bag of medication. We hoped that these would finally see her on the mend again.
In the early hours of 14 April 2018, Jessica woke up coughing. She came into our bed for a snuggle. At that point she didn’t seem any more unwell than she had been since her discharge from hospital. She was restless though and about an hour after she woke up, she suddenly complained that her back hurt. Her daddy sat her up to rub her back and Jessica suddenly collapsed. We called an ambulance and started CPR. Jessica was rushed to hospital, but they could not resuscitate her. She was six and a half years old.
I will never, ever forget that moment that the doctor told us that they couldn’t save her. How everything just seemed to close in around me in that moment. In those first awful hours after Jessica died though, I was just numb. I remember sitting with her, stroking her hair and telling her how thankful I was to have had six and a half years with her. Sitting in the ‘room with the tissues’ afterwards, wondering why I didn’t feel anything – feeling guilty and yet not wanting the numbness to end because I was so scared of how much pain there would be when I finally felt it. A pain that didn’t hit me until we went to leave the hospital with a memory box, having arrived with a child. Nothing can ever prepare you for pain like that.
Because she had collapsed so suddenly at home, we weren’t able to donate her organs as we would have wished to. We were also not able to hold her because of various tests that needed to be carried out although we were able to spend time with her before the post-mortem.
The post-mortem results came through on the day baby Thomas was born. Jessica’s cause of death was given as a congenital heart defect with respiratory viruses being a contributing factor. It didn’t really explain though why she died so suddenly and unexpectedly. We can only assume that her heart just couldn’t cope with the prolonged viral infections and she went into cardiac arrest as a result.
We always knew that Jessica’s time with us could be short. Because of this we made the most of the time we had. We captured as many moments as we could on camera and enjoyed many adventures as a family. At the start of our journey with Jessica, we didn’t even know if she would survive birth. We are grateful that we got to enjoy six and a half wonderful years with her. No amount of time could ever have been enough though and we will always wish we could have had more.
Two and a half years on, Jessica is still very much part of our lives. Thomas might have never met his big sister, but he does recognise her in photos and Sophie often talks about her. She misses her big sister a lot. When Jessica died, she lost her playmate and all that comes with having a sibling close in age; so many little moments that they could have shared together. It breaks my heart too that Jessica and Thomas never got to meet. She would have adored him.
One of the biggest fears that many bereaved parents have is that their child will be forgotten. Sharing Jessica’s story helps to keep her memory alive. Throughout Jessica’s life, we lived with the fear that her life would be short; that we wouldn’t get to see her grow up. Living with that fear could never have prepared us for the reality of life without Jessica. But what it did teach us was this: to try and make the most of the time we had; to enjoy the moments we could and let go of the guilt in the moments when life felt overwhelming and challenging. It taught us to live in the moment and not let the fear of tomorrow take away from the joy of today.
Jessica inspired so many people with her joy and her strength while she was alive and she will always be our biggest inspiration. Living without her is incredibly hard. We miss her every moment of every day. We will always be thankful though for the time we did have with her. It wasn’t enough; no amount of time could have ever been enough. But she was ours and we were hers, and the love that connected us is still there, still just as big as it ever was. We grieve deeply because of the depth of our love for Jessica. Jessica will always be part of us, carried in our hearts wherever we go. And one day, I hope, we will be with her again.