Hi my name is Claire and this is Temperance’s story….
Temperance was born in January 2009 perfectly healthy with no heart issues at all. However in May 2009 when she was four months old she became unwell. We were told it was just viral, but it just seemed to linger on and on. On the 17th of June 2009 I put a very cranky Temperance down for her afternoon nap but after about an hour I heard a scream – the type of scream that makes your blood run cold – after loosing my footing on the stairs on my way up, I discovered Temperance in her cot eyes rolled back, limp and turning blue. Snatching her up from the cot I ran down the stairs and out into the street where I stepped out in front of a passing car and demanded a lift to the hospital. As soon as I got into the car I commenced CPR as I genuinely thought she had an obstruction or something in her airway – you just cannot entertain the idea that your healthy four-month-old baby is having multiple heart attacks – that’s not possible!
When we got to our local A&E Temperance was showing no signs of life. Forty minutes later the medical crew had regained a heartbeat and were looking at sending her to a more specialised unit. The Royal Brompton was where we were sent first and where they discovered that Temperance had contracted a virus called Kawasaki disease which had caused so much damage to her coronary arteries in the form of aneurysms that it was impossible for Temperance to sustain herself without the help of a life support machine.
Temperance was then transferred to Great Ormond Street, placed into a coma and put onto life support machine. After forty-eight hours we were told that she had sustained brain damage due to a lack of oxygen on her way to the hospital – this was a total body blow on top of everything else!
It was decided that until they could tell the exact extent of the brain damage, GOSH would treat her as if she had none and pull out all the stops to try and get her better, and for this I will always remain eternally grateful. Temperance remained on life support for six weeks, during which time there was a small amount of improvement in her heart function. It was established that she had received a moderate brain injury, and although it was not anticipated that she would be able to walk, talk properly or live an independent life, it was decided that she would lead a happy and fulfilled life in her own way. As a result, she was the first child in the history of GOSH to be deemed a candidate for transplant with a moderate brain injury.
After managing to get Temperance off the life support machine with the aid of a large amount of drugs, she was placed on the transplant waiting list and kept at GOSH whilst she was waiting as she was too unstable to be sent to a local hospital. A few weeks later Temperance’s health took a turn for the worse; she was placed on a device called a Berlin Heart, with the hopes it could keep her alive long enough for a donor to be found. Four days later the call came: one had become available and on the 29th August Temperance received her new heart.
It was a bumpy start, Temperance came out of her transplant on the life support machine because her new heart was not working and it didn’t seem to happy to be in its new home. It was not beating by itself, however one week later, whilst on life support, Temperance’s new heart began to beat inside her chest.
Four weeks later we were taking our beautiful little girl home. We are now three and a half years into our Transplant journey and Temperance shows absolutely no signs of brain damage. As an outsider looking in you would never know what she had been through and the diagnosis she was given and so say that she is a Transplant success story would be a slight understatement.