An introduction

I am a mummy to a beautiful two year old daughter who has a rare congenital heart abnormality called hypoplastic left heart syndrome and an equally beautiful heart-healthy three month old daughter. I am a heart mummy, something I would never have chosen to be in a million years, but despite all the heartaches and the rollercoaster ride that have made up my journey into parenthood so far, I feel very blessed to be a heart mummy, particularly when I look at my happy little girl and realise that life could have been so very, very different.

 

This journey began for us in May 2011 when we discovered at our 20 week scan that our baby girl had some serious heart abnormalities. Words we didn’t understand at the time, but would later become so very familiar: mitral atresia, aortic coarctation, ventricular septal defect, hypoplastic left heart syndrome. Three possible options: termination, comfort care or a series of open heart surgeries that if successful, could give our daughter a chance of living into early adulthood – although we were told that the chances of her living beyond five were 50/50. The first we instantly dismissed – both of us felt strongly that it was not for us to decide when our daughter’s life should end. We wanted to give our daughter every possible chance to live and so we knew we wanted to pursue the surgical route. However, our daughter’s heart anatomy was further complicated by a restrictive atrial septum which would reduce the chance of surgery being an option. We asked to meet the team who would probably carry out the surgery and this meeting took place when I was 22 weeks’ pregnant.

The news we were given at that appointment was utterly devastating. The cardiologist who scanned us felt that it was extremely unlikely that our daughter would be suitable for surgery after birth; that she would probably only live a few hours at best and that even if we wanted to attempt the surgery anyway, the odds that she would survive were very low. However, a throwaway, dismissive comment about in-utero surgery which had been performed at Boston Children’s Hospital (the cardiologist didn’t think it would be remotely suitable but felt he should mention it ‘for completeness’) gave us a faint glimmer of hope. We felt we had to explore the possibility of travelling to Boston if this surgery would give our baby a chance of life.

As it turned out, we didn’t have to. Our wonderful team at the John Radcliffe Hospital in Oxford were willing to perform the procedure there despite having never done it before (as far as we were aware, this particular procedure had not been done in the UK before). And so, at 28 weeks’ gestation, our daughter had her first surgical procedure – an in-utero atrial septostomy. We were told that the odds of her not surviving were ‘more than 10% but probably less than 50%’ and even if she did survive, there was a chance I could go into preterm labour and she would be born too early for surgery to be attempted. We were scared but we had to give her every possible chance. Baby Jessica got through her first surgery. It was the first of many miracles that have helped her along her journey.

 

Throughout the rest of my pregnancy, the team remained very guarded about Jessica’s prognosis and I was told repeatedly not to get my hopes up – at best the in-utero procedure had given her a slim chance of being suitable for surgery, but everything would depend on how well she was at birth. The plan was for me to be induced at 39 weeks but Jessica decided to choose her own birthday and arrived at 38 weeks instead. Hearing my miracle baby cry for the first time as she was very briefly passed to me for the briefest of cuddles was definitely one of the most joyful moments of my entire life. Jessica was here, she was alive and crying and looking so much pinker than I thought she would. She was baptised within minutes of her birth by the hospital chaplain and then whisked away to the neonatal unit where I eventually got to go and see her a couple of hours later and this time I was able to spend about half an hour cuddling her which was utterly blissful.

 

The situation with Jessica’s heart was every bit as bad as the team had feared but they were prepared to carry out surgery. At eight hours old, Jessica was taken to theatre for her first open-heart surgery – an atrial septostomy and pulmonary banding (the first stage of the hybrid procedure). After her surgery, she was cared for on the paediatric intensive care unit (PICU) and continued to show everyone just what a fighter she was. A week later, she had a stent put in her ductus arteriosus (completing the hybrid procedure). Three weeks later, we were able to bring our beautiful daughter home – a wonderful moment.

 

 

At fourteen weeks, Jessica was back in hospital for her second open-heart surgery – this time she had the Norwood procedure carried out and spent her first Christmas in hospital recovering from this. We didn’t care that we were in hospital for Christmas – we were just so happy that Jessica was with us for Christmas and doing so well.

Jessica’s next open-heart surgery happened just after Easter when she was seven months’ old – the Glenn procedure. Her recovery from this was complicated by parainfluenza and a wound infection and she spent two weeks on PICU before she was well enough to be transferred to the ward.

 

Since then, Jessica has gone from strength to strength. She has grown into a very happy little girl and brings us so much joy. Her future still remains uncertain – she will need further open-heart surgery in the future. Her heart can never be fixed – she will spend her life trying to function with what is effectively only half a working heart – but surgery will hopefully help to keep her heart functioning as long as possible. We have learnt to live life day-to-day, to enjoy the moment and not look ahead to what tomorrow may hold. We have been supported on our journey by the love, support and prayers of our family and friends and we thank God for everything that has got us here and for every day that we are blessed to have Jessica in our lives.