Our Register for Rosie campaign hopes to drastically turn these figures around by sharing Rosie’s story.
Rosie was placed on medication to assist her heart in pumping blood around her body and allowed to go home. Taking her medicine became a daily routine that her brother and sister helped out with and she regained a bit of her previous spark.
Although she was learning to live with Restrictive Cardiomyopathy, Rosie was still faced with a very high risk of sudden cardiac arrest. Her parents and family set about raising awareness of the condition and raising funds in order to purchase defibrillator units for the local area, arrange CPR training sessions and offer support to Cardiomyopathy UK who were an instant and amazing help to them.
Rosie suffered a cardiac arrest. Her mother had to perform CPR until paramedics and air ambulance teams arrived. Rosie was taken to her local A&E, then transferred to GOSH.
A case meeting on Christmas Eve resulted in the family being allowed home for Christmas. Rosie was given tweaked dosages of medication and allowed to go home in time to put cookies, carrots and milk out for Father Christmas and his reindeer.
A trip to the Out Patients Clinic at GOSH on 2nd February 2016 resulted in Rosie being admitted to Bear Ward’s high dependency unit. After much discussion the decision was made to fit Rosie with a Berlin Heart as her own heart was just too weak. The Berlin Heart is a blood pump that vibrates rhythmically to assist children who cannot pump enough blood with their own natural heart. It does not entirely replace the natural function of the heart. Instead, it works along with the patient’s heart to pump blood.
Rosie left GOSH at the end of September 2016 but rather than the homecoming we all hoped for she went to Tadworth Children’s Trust, Surrey where they specialise in intensive rehabilitation for children with acquired brain injuries. While Rosie now has the perfect working heart, she has suffered severe brain damage from the multiple strokes she had whilst waiting for a donor heart to be found and has a long road ahead.
We hope that in time Rosie’s brain will rewire to enable her to learn to walk and talk again however, this will not be possible without ongoing intensive rehabilitation