When we went for our 20-week scan with our first child, we were excited about seeing our baby on scan. We were a little anxious too, hoping that all would be well, but nothing could have prepared us for finding out that there was something wrong with our unborn daughter’s heart. Before that day, we’d never heard of ‘hypoplastic left heart syndrome’ and could never have imagined how those four words would change our life. Our daughter Jessica’s heart was small and underdeveloped, leaving her with effectively only half a working heart.
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.
The moment Jessica was born and I heard her first cry was one of the most joyous moments of my life. We got to hold her briefly before she was transferred over to the paediatric intensive care unit (PICU) to be prepared for her first open-heart surgery at just a few hours old – the first part of the hybrid procedure. The second part of this surgery was done a week later. Jessica recovered well and came home for the first time when she was four weeks old. It was such a joy to be able have some time together as a family at home.
We were back in hospital again that Christmas for Jessica’s next heart surgery – the Norwood procedure – carried out when she was 14 weeks old. Our first family Christmas was spent together in hospital. 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 seven months’ old, Jessica underwent another surgery – the Glenn procedure. She had a bumpy recovery from this with parainfluenza and a wound infection complicating things but after four weeks, she was home once more and doing well.
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.
Jessica’s heart-healthy little sister Sophie arrived in 2013. 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 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.
We’ll never know what caused her sudden collapse that night. The post-mortem investigation found that she had a small genetic deletion unrelated to her heart condition (subsequent tests showed my husband has the same deletion) and that she had a couple of minor respiratory viruses. Her cause of death was given as a congenital heart defect with respiratory viruses being a contributing factor. 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. We will always wish we could have had more.
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. Jessica inspired so many people with her joy and her strength while she was alive. She will always be our biggest inspiration. Living without her is incredibly hard and we miss her every moment of every day.
You can also listen to me sharing Jessica’s story and how we are learning to live alongside grief on the Motherhood Exposed podcast here.