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There are many ways you can help children and their families get the care they need.
Having identified your child's heart condition at Boston Children's, we'll begin treating him, so that we may ultimately return him to good health. Specific treatments for TAPVR or PAPVR depend on the extent, location and variation of the defect.
Obstructed TAPVR. Your child most likely will be admitted to Boston Children's cardiac intensive care unit (CICU) once symptoms are noted. Many babies with obstructed TAPVR are critically ill at the time of diagnosis and require intensive support with medications and a ventilator (breathing machine).
Babies with severe obstructed TAPVR may require a specialized life support system called ECMO (extracorporeal membrane oxygenation), an advanced technology that functions as a replacement for a critically ill child's heart and lungs.
We may also give him IV (intravenous) medications to help his heart and lungs function more efficiently.
Unobstructed TAPVR. Children who are diagnosed with unobstructed TAPVR are usually well enough to await surgery either at home or in the general inpatient cardiology unit. Some children may need medications to improve the function of their heart and lungs while awaiting surgery.
Surgery for TAPVR
The goal of surgery for TAPVR is to restore normal red blood circulation to the left side of the heart. In the procedure, surgeons:
After any procedure, your child will need to be followed by a pediatric cardiologist who will:
Your child may need additional surgery or catheterization during his childhood, so it's important that his cardiologist follow him periodically. And as he recovers and grows, be sure to follow a program of regular well-baby/well-child checkups. And to the greatest extent possible, encourage your child to live normally. Even if some physical activities are limited, your child and your family can enjoy a full life together.
Surgical techniques for anomalous pulmonary venous return are continually being refined, with the long-term outlook continually improving. Still, your child will need lifelong monitoring by his cardiologist (and possibly medication), since he may be at some risk for arrhythmias, infections, or a recurrence of obstruction of the pulmonary veins or at the surgical site.
For the approximately 20 percent of babies who develop obstructed pulmonary veins after their initial surgery, additional surgeries or catheterizations may be needed to treat their continuing heart disease.
Your cardiologist will help you create a long-term care program as your baby matures into childhood, the teen years and even adulthood. The doctor may recommend that certain strenuous activities be limited, especially if your child has any arrhythmias or residual obstruction. We'll prevent and treat complications, and will advise on daily-life issues, such as activity levels, nutrition and precautions related to pregnancy.
At Boston Children's, we understand that a hospital visit can be difficult, and sometimes overwhelming. So, we offer many amenities to make your child's—and your own—hospital experience as pleasant as possible. Visit our Center for Families for all you need to know about:
In particular, we understand that you may have a lot of questions if your child is diagnosed with TAPVR. How will it affect my child long term? What other problems could arise? We can connect you with a number of resources to help you and your family through this difficult time, including:
To find out more, visit the Family resources page of Boston Children's For Patients and Families website.
Children who’ve had surgery for heart disease as infants are at greater risk of neurodevelopmental problems. By school age, they tend to have more academic, behavioral and coordination difficulties than other children. Boston Children’s Cardiac Neurodevelopment Program—one of just a handful in the United States—provides expert screening, evaluation and care for infants, children and teens with congenital heart disease who are at risk for neurodevelopmental problems. Screening begins soon after your child’s first cardiac surgery and continues as your child grows to make sure she’s hitting her developmental milestones.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”