Diagnosis
Truncus arteriosus is usually diagnosed soon after a child is born. The baby may look blue or gray and have trouble breathing.
When a baby is born, a healthcare professional listens to the baby's lungs to check breathing. If a baby has truncus arteriosus, the healthcare professional may hear fluid in the lungs during this exam. The health professional also listens to the baby's heart to check for irregular heartbeats or a whooshing sound, called a murmur.
Tests
Tests to diagnose truncus arteriosus include:
- Pulse oximetry. A sensor placed on the baby's fingertip records the amount of oxygen in the blood. Too little oxygen may be a sign of a heart or lung condition.
- Chest X-ray. This test shows the condition of the heart and lungs. It can show the size of the heart. A chest X-ray also can tell whether the lungs have extra fluid.
- Echocardiogram. An echocardiogram uses sound waves to create pictures of the beating heart. This is the main test to diagnose truncus arteriosus. It shows blood flow through the heart and heart valves. In a baby with truncus arteriosus, the test shows one single large vessel leading from the heart. There's typically a hole in the wall between the ventricles.
Treatment
Babies with truncus arteriosus need surgery to improve blood flow and oxygen levels. This helps manage the symptoms of the condition. Many procedures or surgeries might be needed, especially as a child grows. Medicines might be given before surgery to help improve heart health.
Children and adults with surgically repaired truncus arteriosus need regular health checkups for life.
Medications
Some of the medicines that a child might take before truncus arteriosus surgery include:
- Water pills. Also called diuretics, these medicines help the kidneys remove extra fluid from the body. Fluid buildup is a common symptom of heart failure.
- Positive inotropes. These medicines strengthen the heart's ability to pump, which improves blood flow. They also help control blood pressure. Positive inotropes may be given by IV to treat severe heart failure symptoms.
Surgery or other procedures
Most infants with truncus arteriosus have surgery within the first few weeks after birth. The specific type of surgery depends on the baby's condition. Usually, the baby's surgeon:
- Rebuilds the single large vessel and aorta to create a new, complete aorta.
- Separates the pulmonary arteries from the single large vessel.
- Uses a patch to close the hole between the two lower heart chambers.
- Places a tube and valve to connect the right ventricle with the pulmonary arteries. This allows the heart to pump blood to the lungs.
The tube used to create the new pulmonary artery doesn't grow with a child. Follow-up surgeries are needed to replace the tube as the child grows.
Later surgeries may be done with a flexible tube called a catheter. This avoids the need for open-heart surgery. In one type of catheter procedure, the healthcare professional inserts the catheter into a blood vessel in the groin and guides it to the heart. A new valve can be delivered through the catheter to the proper area.
Sometimes a small balloon at the tip of the catheter is inflated at the site of a blockage, making a blocked artery wider. This procedure is called balloon angioplasty.
After surgery for truncus arteriosus, a person needs lifelong follow-up care with a heart doctor specializing in congenital disease. This type of doctor is called a congenital cardiologist.
Complications of surgery
The surgery to repair truncus arteriosus has risks that can lead to complications. Some surgeries to treat this condition can result in a child's death. But research has shown that these surgeries have gotten better over time. Both surgical survival and long-term survival after leaving the hospital have improved over the last 30 years.
Survival rates
Truncus arteriosus treatment greatly improves survival for babies with truncus arteriosus. After treatment and release from the hospital, almost 80% of these babies are alive after 30 years, according to research.
Truncus arteriosus is not a condition that gets better on its own. Without treatment, a baby's lifespan may be very short. Babies who aren't treated live an average of five weeks. About 15% of babies who do not have surgery for the condition survive to age 1. After that time, these children tend to get complications from the condition.
Self-care
If you or your child had truncus arteriosus, your healthcare professional may recommend taking a few steps to protect the heart.
- Exercise limits. Some people with heart conditions need to limit exercise and sports activities, especially competitive sports. Ask your healthcare professional which sports and types of exercise are safe for you or your child.
- Antibiotics. Sometimes, heart conditions can increase the risk of infection in the lining of the heart or heart valves. This infection is called infective endocarditis. Antibiotics may be given to prevent infections before dental procedures and other surgeries. It's also important to have good oral hygiene and regular dental checkups.
If you've had truncus arteriosus repair surgery and want to become pregnant, talk with your healthcare professional first. Ask about the possible risks and complications. It's best to work with healthcare professionals who have training in adult congenital heart disease and high-risk pregnancies.
Depending on the level of lung damage that happened before truncus arteriosus surgery, pregnancy might or might not be advised. Pregnancy is considered very high risk for those with Eisenmenger syndrome and is not advised.
Coping and support
Caring for a baby with a serious heart condition, such as truncus arteriosus, can be challenging. Here are some strategies that might be helpful.
- Seek support. Ask for help from family members and friends. Connecting with others in support groups may help manage stress. Contact nonprofit organizations, such as the American Heart Association.
- Keep track of your baby's health history. Include details about any diagnoses, medicines, surgeries and other procedures. Note the dates for surgeries and procedures. Include medicine dosages. Write down healthcare professionals' names and phone numbers. If possible, get a copy of medical reports. This information helps you remember who provided care. It's also helpful to healthcare professionals who are not familiar with your child's health history.
- Talk about your concerns. You might worry about the risks of strenuous activity, especially after heart repair surgery. Ask your child's heart doctor, called a pediatric cardiologist, which activities are safe for your child.
Preparing for your appointment
If a baby has truncus arteriosus, the condition will likely be diagnosed soon after birth. Sometimes it's diagnosed before birth during a pregnancy ultrasound. To plan treatment, your baby may see a healthcare professional trained to manage childhood heart disease, called a pediatric cardiologist.
What you can do
If possible, ask your family members about their medical history. Heart conditions present at birth can be passed down through families. So it's helpful to know whether anyone in your child's family has a history of an early heart condition.
Also make a list of questions to ask your baby's healthcare professional. Preparing this list can help you and your healthcare team make the most of your time together. Here are some questions you might want to ask:
- What tests are needed?
- What are the treatment options?
- What are the possible side effects or complications of treatment?
- How do we check for complications?
- What is the long-term outlook for my child?
- My baby has other health conditions. How do we best manage them together?
- If I have another baby in the future, what are the chances of this happening again?
- Are there any brochures or other printed material that I can have? What websites do you recommend?
Don't hesitate to ask other questions.
What to expect from your doctor
Your child's healthcare professional will likely ask the following questions:
- Does your baby ever look blue or gray?
- How long are feeding times?
- How much does your baby eat?
- How often and how long does your baby sleep?
- How does your baby respond to touch?
- Does your baby ever breathe fast?