For those of you who dont know what Amelia's surgery will involve....
Truncus arteriosus is characterized by a large ventricular septal defect over which a large, single great vessel (truncus) arises. This single great vessel carries blood both to the body and to the lungs.
Surgery is required to close the ventricular septal defect and separate blood flow to the body from blood flow to the lungs. This is generally done early in infancy to prevent high blood pressure from damaging the lungs' arteries. A patch is used to close the ventricular defect. The pulmonary arteries are then disconnected from the single great vessel and a tube (a conduit or tunnel) is placed from the right ventricle to these pulmonary arteries. This is sometimes called a Rastelli or “Full” Repair. Outside of major replacements, this represents the only open surgery that the baby should need to go through.
We have been told to expect the baby to be in the hospital for about one month following this surgery.
Longer Term Difficulties
In the long-term period after the operation, the heart muscle's ability to contract may decrease. You may need medication including diuretics, agents to help the heart pump better and drugs to control your blood pressure.
Patients with repaired truncus arteriosus have a higher risk for arrhythmias can originate from the atria (the heart's two upper chambers) or the ventricles (the two lower chambers).
Sometimes they may cause dizziness or fainting. Medication may be required to control them. In rare cases, a procedure in the cardiac catheterization laboratory or the operating room may be required to eliminate these arrhythmias and control symptoms.
Sometimes, even when the defect is repaired early, the pulmonary hypertension becomes progressively worse. You may experience shortness of breath, decreased exercise endurance and sometimes headaches and dizziness.
Women with repaired truncus arteriosus may handle pregnancy well. However, some may not.
Additional Surgeries
Conduit Replacement The conduit connecting the right ventricle to the pulmonary artery conduit may become narrowed or stenotic over time. Thus, it may have to be replaced from time to time. Timing of the replacement varies. The peripheral pulmonary arteries also may become narrowed and require treatment. Sometimes conduits and peripheral pulmonary artery narrowings may be dilated using a balloon-tipped catheter or an expandable stent in the cardiac catheterization laboratory. This procedure may help extend the time between conduit changes. Sometimes surgery is required to enlarge the narrowed area. The cardiologist will need to decide , over time, whether a balloon/stent procedure or surgery is best.
Aortic Valve Replacement
The aortic valve is actually the large truncal valve from the single vessel, which arose over the ventricular septal defect before surgical repair. This valve sometimes becomes leaky over time and may need to be replaced.
Truncus arteriosus is characterized by a large ventricular septal defect over which a large, single great vessel (truncus) arises. This single great vessel carries blood both to the body and to the lungs.
Surgery is required to close the ventricular septal defect and separate blood flow to the body from blood flow to the lungs. This is generally done early in infancy to prevent high blood pressure from damaging the lungs' arteries. A patch is used to close the ventricular defect. The pulmonary arteries are then disconnected from the single great vessel and a tube (a conduit or tunnel) is placed from the right ventricle to these pulmonary arteries. This is sometimes called a Rastelli or “Full” Repair. Outside of major replacements, this represents the only open surgery that the baby should need to go through.
We have been told to expect the baby to be in the hospital for about one month following this surgery.
Longer Term Difficulties
In the long-term period after the operation, the heart muscle's ability to contract may decrease. You may need medication including diuretics, agents to help the heart pump better and drugs to control your blood pressure.
Patients with repaired truncus arteriosus have a higher risk for arrhythmias can originate from the atria (the heart's two upper chambers) or the ventricles (the two lower chambers).
Sometimes they may cause dizziness or fainting. Medication may be required to control them. In rare cases, a procedure in the cardiac catheterization laboratory or the operating room may be required to eliminate these arrhythmias and control symptoms.
Sometimes, even when the defect is repaired early, the pulmonary hypertension becomes progressively worse. You may experience shortness of breath, decreased exercise endurance and sometimes headaches and dizziness.
Women with repaired truncus arteriosus may handle pregnancy well. However, some may not.
Additional Surgeries
Conduit Replacement The conduit connecting the right ventricle to the pulmonary artery conduit may become narrowed or stenotic over time. Thus, it may have to be replaced from time to time. Timing of the replacement varies. The peripheral pulmonary arteries also may become narrowed and require treatment. Sometimes conduits and peripheral pulmonary artery narrowings may be dilated using a balloon-tipped catheter or an expandable stent in the cardiac catheterization laboratory. This procedure may help extend the time between conduit changes. Sometimes surgery is required to enlarge the narrowed area. The cardiologist will need to decide , over time, whether a balloon/stent procedure or surgery is best.
Aortic Valve Replacement
The aortic valve is actually the large truncal valve from the single vessel, which arose over the ventricular septal defect before surgical repair. This valve sometimes becomes leaky over time and may need to be replaced.
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