Abbie was born a healthy child despite her father having a congenital heart defect and having extra scans during my pregnancy. At her 6 weeks gp check up he detected a murmur and we were referred to local hospital. At 13 weeks old Abbie had her appointment at our local hospital, and this was the day we found out about Abbies condition. The consultant asked us to wait, we went back into the office and we were told our beautiful baby was in severe heart failure, she was blue lighted through to the Freeman Hospital Newcastle and within 12 hours had her first open heart surgery.
We had a cardiac liaison nurse assigned to us to explain Abbies heart condition, it was grim, but we needed to know the facts. There is no cure for Abbie she will only receive pallitive care to extend her life. Life expectancy we were quoted would be early 20's, these children are often not suitable for transplant, although we have since met children who have successfully received new hearts with this condition.
Abbies next surgery was when she was 4 years old, another 10 hour long open heart surgery, she suffered a mild stoke during that surgery but recovered fully.
Her health started deteriorating again last year, having to stop most of her activities, like dancing and swimming, she can't keep up with her friends and generally not much energy. So it was decided that in December 2013 she would undergo the final procedure avavilable to Hypoplastic Right Heart children. She went down for surgery at 11, and we started the long wait for the phone call that she would be ok.
At 20.30 we got the call to say she was on her way to picu and we could make our way there to see her, we could breath again. We got to the waiting area and a nurse came out to say they were not quite ready yet. We waited another hour, the whole time thinking the worse. When the nurse came back it was good news the extra time was needed as she was trying to breath for herself and so they were taking her off the ventilator, we were so proud of our little girl.
Surgically there is no more fixes for Abbie, we don't know what obstacles will be in the future. We live for today and try to give her and her brothers the best we can. She is our hero.