Emily’s story

Emily was born on 10th August 2001 in our local hospital in Southport, weighing a healthy 71bs 10oz and after a non eventful pregnancy we were totally unprepared for what was about to happen.

During the paediatric check it was revealed that Emily had a heart murmur, we were obviously concerned but staff were quick to reassure us that as Emily was such a healthy pink colour it was probably nothing serious. 2 days later Emily still had her heart murmur and although we were constantly told it seemed unlikely to be anything worrying, we were referred to Alder Hey so that Emily could have a more detailed scan.

At two weeks old we took Emily to Alder Hey and although we were apprehensive neither of us were prepared for the news that Emily had Tetralogy of Fallot. We felt as if our world had turned upside down, from our happiness and elation at the arrival of our beautiful little baby to the complete shock and despair at the realisation that she had a serious heart condition and would need a corrective open heart operation. Much of that time is now a blur, we struggled to take in the news and over riding everything was the fear that our baby might die. At that point I remember feeling as if our world had collapsed, it is difficult to put into words all the emotions we felt, fear, anxiety, sadness, anger and of course wondering ‘Why us? Why our baby?’

Emily had her first catheter at 5 weeks and then we returned home to wait until she was old enough for surgery. We found it quite an isolating experience as none of our circle of friends or family could really understand or appreciate what we were going through. I coped by blocking it out and not letting myself think about it, however I was forced to confront her condition when she suddenly began to have blue spells when she was 3 months old. The following two months were a nightmare, by Christmas she was constantly waking in the night and ‘spelling’ and we were in a permanent state of worry. At 5 months Emily had deteriorated and we were told she would have to have a BT shunt operation as she wasn’t ready for her open heart surgery. That first proper time in hospital was an eye opener. The staff were fantastic and we made several new friends on the ward, but nothing can prepare you for taking your child for surgery. After the operation Emily was suddenly like a different child. She had so much more energy and for the first time we were able to relax and begin to enjoy her.
We were determined to treat Emily ‘normally’ and we did the rounds of play groups, ‘mums and toddlers’ and gym babes, however it’s sometimes hard to avoid being over protective when you know that a cough or cold could lead to a chest infection and then something more serious. Despite ending up in hospital a couple of times we got through the year and a second catheter revealed that Emily was ready for her open heart surgery.

She went into Alder Hey on 2nd April 2003 and was back home two weeks later. Again, the staff at Alder Hey were fantastic and by then everything was familiar to us. Emily was back to her normal self 2 weeks after the operation and 3 months later started nursery. It was when I returned part time to my job as a teacher and found I had a little girl in my class with Tetralogy of Fallot that I found out about the Association for Children with Heart Disorders. Her mum told me about the Christmas party run by the Association and after contacting Val Frew we took Emily along and she loved it. Since then we have gone along to the monthly meetings at Alder Hey and helped with fund raising for the Association. It has been great to be involved with other parents who know what you have experienced and been through.

Emily is now 3 years old and a happy and talkative little girl. She lacks confidence physically but the fantastic support she has had from her Nursery has helped her enormously. I wouldn’t say that we can now relax completely as we always still worry if she gets a serious chest infection but the support from the Association and other people has meant that we no longer feel so isolated. When Emily was first diagnosed it would have helped us greatly if we could have met other parents in the same situation or to even have read about a child with Fallots doing well would have given us hope when we really needed it.