Finding out that your child has a heart defect is scary, devastating news for any parent to receive, but there is so much joy and amazement seeing what these Heart Heroes can do in the face of adversity - Margaret Keller
image by: Help Baby Rohaan
At just one-week old doctors discovered I was born with Truncus Arteriosus - and given a 1% chance of life.
I don’t remember my first heart event. But my mother vividly remembered Christmas Eve 1974 when she found me blue in my crib...
Repair surgery was successfully carried out a week later… I’ve been told my entire life that I’d need ongoing heart surgeries or worse – that I wouldn’t survive. I was told that I’d never reach adulthood, have children or live a normal, healthy lifestyle... Over the following years, my spirited determination saw me through many surgeries and helped me rise when I was seriously ill. I went on to have three beautiful children who continually…
It's not game over, it’s just a different journey.
We have created this site to help you stay up to date on Shirley's progress. Shirley was born with a very rare form of congenital heart disease (CHD) called truncus arteriosus. Truncus is a life threatening condition and requires multiple surgeries to be managed. There are about 300 children born each year in the US with truncus and when you compare that to the nearly 4 million live births you can understand just how special our little girl is
Blood from both ventricles of the heart is mixed, resulting in a situation in which some oxygen-rich blood travels needlessly back to the lungs and some oxygen-poor blood travels to the rest of the body. Babies with this condition may have a bluish tint (cyanosis) to their skin, lips, and fingernails. In most cases, truncus arteriosus occurs in conjunction with a missing upper portion of the wall between the ventricles of the heart (ventricular septal defect).
the first case with truncus arteriosus was reported by Wilson in 1798, and the existence of the entity was confirmed by accurate clinical and autopsy reports of a 6-month-old infant by Buchanan in 1864.
There is a lack of normal separation of the embryological truncus arteriosus into a separate aorta and pulmonary trunk. This results in a single arterial vessel that originates from the heart that supplies the systemic, pulmonary, and coronary circulations. It may also result in a common truncal valve which can contain 2 to 4 cusps.
In truncus arteriosus, a single blood vessel emerges from the heart and then branches into a pulmonary artery and an aorta. This single vessel, called the truncus arteriosus, emerges from both ventricles – specifically from the hole in the wall between the two ventricles, called the ventricular septal defect (VSD).
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