Rosie's story

By mum Sara.

Rosie was born on 28 November 2012. She was a perfectly healthy little girl for the first year and a half of her life, had a huge appetite and was full of energy.

A few months before her second birthday she started to suffer from repeated illnesses, totally went off her food and struggled to muster any energy to play with her brother and sister. She was eventually admitted to hospital for numerous tests. In July 2015 she was transferred to see a cardio specialist and that was the point at which our whole family’s world was turned upside down.

Rosie was diagnosed with restrictive cardiomyopathy. We were told that the result of this condition is that the heart will eventually be too weak to function and will fail. She was given medication to assist her heart in pumping blood around her body and allowed to go home. Less than a week before Christmas Rosie had a cardiac arrest. I gave her CPR until paramedics and air ambulance teams arrived. 

Following this, Rosie was put on the urgent heart transplant list.

At the start of 2016 Rosie was not growing in size or strength due to her heart not working hard enough. The decision was made to fit a Berlin Heart* as her own heart was just too weak. She stayed in intensive care for the next five months. Problems with blood clots and bleeds meant that Rosie was fitted with another mechanical heart called Levitronix. She stayed on this for over three months before going back on to a Berlin Heart.

After months of waiting, we received a call to say that a donor heart had been found for Rosie. Rosie’s surgeon said it was “the perfect transplant surgery” with everything going according to plan. Rosie left the hospital at the end of September 2016. She is having rehabilitation because of strokes she had whilst waiting for a donor heart.

*A Berlin Heart is a device that supports the heart to pump blood.

©Cardiomyopathy UK. May 2017.