Every year, 100,000 babies don't make it to their first birthday because of CHD.
Billy-Blue Wilson | Heart Warrior of the Week

Name: Billy-Blue Wilson

Date of Birth: 4/5/2019 - 8/6/2019

Location: Derby, Derbyshire, United Kingdom

Treatment Provided By: East Midlands Congenital Heart Centre.

Number of Interventions: 5

Types of Interventions: Open-heart surgery, catheterization procedure, ECMO

Time Spent in Hospital: The whole of his life, he never made it home.

Fun Fact: Billy always had a smile for his nurses and doctors.

Defects: Critical aortic stenosis, coronary fistula, coarctation of the aorta, pulmonary hypertension, pulmonary edema

Anatomy: (Aortic stenosis) The aortic valve, which connects the left ventricle to the aorta, is severely narrowed.

Complications: This abnormality restricts the blood flow from the left ventricle to the aorta and may also affect the pressure in the left atrium. As a result, the heart has to pump harder and the body is deprived of oxygen.

Symptoms: Fatigue upon exertion, failure to gain weight, poor or inadequate feeding, breathing problems.

Treatment: Options for aortic valve atresia/stenosis include medical management with medicine, valve replacement via open-heart surgery, or a balloon procedure via catheterization.

Prevalence: Aortic valve atresia/stenosis accounts for approximately 6% of all CHS cases, occurring in 3.8 out of every 10,000 live births worldwide.

A letter to Billy from his Mom, Lucy:


You were our happy ending. The moment you were born, everything slipped into place for our family. It wasn't until 2 hours after your birth that you showed signs of breathing difficulties and it was soon discovered you had a severe heart defect.

You were intubated immediately, but we were told to expect the worst as the hospital you were born at frantically tried to find a bed for you at a specialist cardiac centre. It was clear from the first 24 hours that you were a fighter, you wanted to be alive and fought your way to the first catheterization procedure at only 22-hours-old.

From the moment you were born you taught me more about life than I had learned in my 35 years and 12 years as a qualified nurse. Billy, you fought through 2 open-heart surgeries and 2 more catheterization procedures, as well as time on ECMO (life support) and many complications.

It sounds cliche, but you touched everyone you met – every nurse, surgeon, cardiologist and doctor fell in love with you. Probably because you were beautiful, and brave, and had a smile for everyone.

Preparations were made for you to come home; you were breathing on your own and breaking every cardiology rule book. Then... you suffered a sudden cardiac arrest and you fell asleep for the last time. Some days I struggle to function knowing the ending to our fairytale shouldn't have ended like it did. CHD has broken our hearts. We love you and miss you always.

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