Olivia was born in November 2014 following a very normal pregnancy with no complications. She was born at full term and weighed a very tiny 4lb 11oz.
Everything was normal until the life changing day in December 2014. Olivia wasn’t quite herself and kept crying and then going very lethargic. After a few calls to friends who gave their wisely Mummy advice, I took Olivia to the out of hours doctors and I still remember so clearly him telling me her chest didn’t sound right and off I went to A&E at Queens Medical Centre Nottingham. Following that, things all went a little crazy – one minute we are sitting in the waiting area and then after seeing the triage nurse, Oliva had oxygen saturations reading 64 and we were rushed to a room and a mass of doctors and nurses piled in. The doctor listened to Olivia’s chest and stated she could hear a heart murmur. I was of course very shocked but was reassured when they said not to worry too much as it may not be anything too serious. Oh how I wish that had been the case! The following day, Olivia underwent many tests and was diagnosed with a condition called Tetralogy of Fallots in which 4 main functions of the heart were not working correctly. I was told the seriousness of the condition but that heart specialist surgeons may be able to do something for her. Glenfied Heart Specialist Hospital in Leicester was contacted and we awaited a bed for admission. Olivia was kept alive on oxygen machines at QMC and on December 19th we were sent by ambulance to Glenfield where 2 days later Olivia underwent a life saving stent procedure to widen the pulmonary artery sending oxygenated blood to her lungs.
The stent was part one of a serious of procedures that were intended to keep Olivia stable while she grew big enough to undergo an open heart operation with the hope of repairing the failing functions of her heart. Three stent operations later and it became clear to the surgeon at Glenfield that Olivia’s condition was more complex than originally thought. We had gone from the prospect of a repair to being told there was little more they could do and that Olivia would inevitably go into heart failure and die. Her notes were sent to Great Ormond Street and Birmingham Children’s Hospital for second opinions and a consultant at Birmingham said he would take Olivia on as one of his patients and look into what he could do to help. After many appointments and discussions it was decided that Oliva hadn’t got Tetralogy of Fallots but had got a complicated structural issue known as Double Outlet Right Ventricle with complete Atrioventricular Septal Defect. Although a repair now wasn’t possible and therefore Olivia’s condition had become palliative, the surgeons felt there were things they could do to help give her some quality of life despite her reduced life expectancy. Olivia underwent her open heart procedure in July 2016 and now lives with half a working heart. She will undergo further operations prior to starting school and it is hoped she will be able to live a stable life prior to her suffering heart failure which is expected to take her life in her late twenties to early thirties.
Olivia has been given the gift of life by the amazing world of surgeons and medical technology and lives it to the full every day. She may have half a heart and half the energy of other children her age but she has the biggest personality and more love to offer in her broken heart than many heart healthy people I know.