Truncus Arteriosus: A Parent’s Guide

Truncus Arteriosus is a serious heart defect that is present at birth and can shorten the lifespan of a child’s life if not treated correctly.

In this guide, we’ll explain what exactly Truncus Arteriosus is, what the symptoms are and what other conditions are associated with it; as well as how we can support families.

Key Points:

• Truncus Arteriosus is a congenital heart defect, meaning it is present at birth.
• The condition affects the blood vessels that come out of the heart’s ventricles, causing oxygen-rich and oxygen-poor blood to mix.

A baby born with Truncus Arteriosus may show a variety of different symptoms, such as:

• A blue or purple tint to the skin
• Fast or laboured breathing 
• Difficulty feeding 
• Issues with gaining weight 
• Increased tiredness 
• Increased sweating, often while feeding 
• Heart murmurs 

A child born with Truncus Arteriosus may not look sick straight away, but if they do show any of the signs or symptoms listed above, you should always consult with your child’s doctor. Often, issues with the heart will present themselves in very similar ways, which is why it is important to get a diagnosis as soon as possible. 

How is Truncus Arteriosus diagnosed?

Doctors may find Truncus Arteriosus before birth through a fetal echocardiogram, which is a test that uses sound waves to create a moving picture of the heart. This test allows doctors to see how the baby’s heart looks and to check if it is functioning the way it should be while in the womb. 

Truncus Arteriosus is not always diagnosed prenatally and detection can be missed due to various factors. The condition may be discovered after birth, such as if a newborn shows signs of cyanosis (bluish skin), difficulty breathing or heart murmurs. 

A pulse oximetry may also be used, which is a simple, non-invasive test that measures the amount of oxygen in the baby’s bloodstream.  

If an issue is detected, further tests such as heart ultrasounds (transthoracic echocardiogram) will be performed to determine the issue in the heart. This test confirms the diagnosis by showing a single large artery instead of separate pulmonary and aortic arteries.

How is Truncus Arteriosus treated?

Truncus Arteriosus requires surgical repair in early infancy to prevent severe complications like heart failure and high blood pressure in the lungs (pulmonary hypertension). Without surgery, the condition is life-threatening.

During the surgery, the aorta and pulmonary artery are separated in order to create a pathway for the blood to travel from the right ventricle out to the lungs. These are connected using a tube with a value. If your child also has a Ventricular Septal Defect, this will be closed with a patch to ensure oxygen-rich blood is pumped efficiently to the body.

After the surgery, your child will need to stay in hospital in order to recover correctly. They also may need additional surgeries as they grow.

Open heart surgery is an extremely effective method of treating Truncus Arteriosus, with over 90% of children receiving the surgery going on to live healthy and happy lives. 

Are there any other conditions associated with Truncus Arteriosus?

Yes, in fact, almost all children born with Truncus Arteriosus are also born with a Ventricular Septal Defect (VSD). 

A VSD is a hole in the wall between the right and left ventricles. This hole allows oxygen-rich blood to mix with the oxygen-poor blood and go through the single artery to the lungs. As a result of this, the lungs can get too much flowing into them. 

 Other conditions that may be, but not always, associated with Truncus Arteriosus include:

• Atrial Septal Defects – This is a hole in the heart wall that separates the heart’s two upper chambers.

• DiGeorge Syndrome – A birth condition caused by a small part of chromosome 22 being absent.

• Patent Ductus Arteriosus – A persistent opening between the two major blood vessels that lead away from the heart.

• Atrioventricular Septal Defect (AVSD) – Complete AVSD occurs when there is a hole in the centre of the heart, and partial AVSD occurs when there is a hole either between the atrial or the ventricular wall. 

What happens as your child grows up with Truncus Arteriosus

If the Truncus Arteriosus is not treated effectively through surgery when your child is young, most babies will not survive. 

Surgery is one of the most effective ways to treat Truncus Arteriosus, and most babies will recover well and go on to live normal, healthy lives. However, some children may need further surgeries as they grow older, as well as regular appointments with their doctor to prevent any further issues. 

At Lagan’s Foundation, we provide specialist respite care and short break services for children with congenital heart defects, such as Truncus Arteriosus. 

We know how hard it can be for parents and carers, which is why we offer individual and flexible care services to families who have children with congenital heart defects. Not only does this ensure your child gets the best care and support they need, but it gives you a well deserved break.

If you think your child and family could benefit from respite care or short break services, get in touch with our team today to see how we can help.