Rose was born with a terminal heart defect called Interrupted Aortic Arch. Only 1 in 50,000 babies is born with this condition. The cardiac unit at Leeds General Infirmary diagnosed the defect at 20 weeks pregnant; they followed up at 28 weeks and 35 weeks with fetal echocardiogram. When Rose was born she was taken straight to the Neo-natal unit and then transferred to the cardiac ward. Without this care she would have died. 

When Rose was just 3 days old she had open heart surgery lasting over 10 hours. She was in hospital for 5 weeks and then had fortnightly appointments to monitor her progress. At 9 months old she had her second round of heart surgery after which she had a stroke. Rose had significant brain damage to both hemispheres of the brain and was left paralysed in her left side. 

The CHSF is a vital resource for families like ours who face congenital heart disease. They provide life-saving medical equipment for the Leeds Congenital Heart Unit, parent accommodation for families and vital ward resources. They also fund staff training, scientific research and new clinical roles.  

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