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    SUPPORTING CHILDREN WITH CONGENITAL HEART DISEASE

    Amelia Matters ...

    Our Daughter Amelia Isabel Hine was born on 29th September 2006. She was born with a form of Congenital Heart Disease (CHD), a condition known as Tricuspid Atresia. Tricuspid Atresia is one of the rarest, most complex of Heart Conditions, affecting 8 out of every 100,000 births in the UK, this does not include those children lost during pregnancy. One out of these 8 children is also born with other complications, unfortunately, Amelia is one of these children.

    Amelia in HospitalHer condition was discovered during Lisa’s 20-week scan. At that time we had no idea what heart disease was or what it involved. The excitement of our daughter’s birth was dampened by the thought of what was ahead, almost like facing the unknown. We quickly learnt about her condition to gain whatever understanding we could of how she would be treated to remedy her problem, we had to.

    Amelia’s condition is known as Type 1B Tricuspid Atresia (with normally related great arteries). She has no Tricuspid Valve and a barely formed Hypoplastic Right Ventricle. She also has a growth at her Pulmonary Valve, a narrowing of the Pulmonary Artery (Mild Pulmonary Stenosis) a large ASD (Atrial Septal Defect) between her two Atria and a VSD (Ventricular Septal Defect). The bottom line is, to date; there is still no known cure for Tricuspid Atresia (or any single ventricular heart condition) and at some point in her future she will require at least one heart transplant.

     

     

     

     

     

     

     

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