image by: HWN

HWN Suggests

I was born with a rare heart condition

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…

read full article

Featured

 Truncus arteriosus

Truncus arteriosus is frequently associated with other cardiac anomalies including: ventricular septal defects, aortic arch abnormalities, single ventricle, atrioventricular valve abnormalities, absent ductus arteriosus, and abnormal pulmonary venous return. Extracardiac anomalies occur in up to 50% of the cases and include: situs inversus, asplenia, bony defects, cleft lip/palate, urinary tract abnormalities (absent or aplastic kidney), absent gallbladder, hypoplastic lung, and neural tube defects.

Articles of Interest

A Little Lady With A Lot Of Heart

We knew that one of the things done to repair Lola’s heart defect was to put a conduit into her heart that would create the aorta. As she grew, she would eventually outgrow the conduit and it would need to be replaced.

Common Arterial Trunk or Truncus Arteriosus

The clinical picture in most infants is that of a large left-to-right shunt with intracardiac mixing, the latter of which results in mild cyanosis.

Learning about Truncus Arteriosus

Up to 50% (varies in studies) of cases are associated with chromosome 22q11 deletions (DiGeorge Syndrome). The neural crest, specifically a population known as the cardiac neural crest, directly contributes to the aorticopulmonary septum.

Learning About Truncus Arteriosus in Newborns

In truncus arteriosus, the trunk doesn't split where it's supposed to. Instead of having two separate arteries leaving the heart, there is one big artery that doesn't split in two until after it leaves the heart. So red blood and blue blood get mixed together. The baby's body doesn't get enough oxygen.

Mending a heart

Born with a complex heart defect, Andrew Christensen grew up wondering what kind of future awaited him. Thirty years later, he has plans.

“It’s not game over, it’s just a different journey”

Born with a rare congenital heart condition, doctors didn't think Emma-Kate would survive into adulthood. But she's consistently proved the doctors wrong, and is keen to share her hope with others.

Resources

Shirley's Grand Adventure

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

NORD

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).

Pediatric OnCall

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.

Radiopaedia

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.

SecondsCount

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).