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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, we're able to begin the process of treating him, so that we may ultimately return him to good health.
Specific treatments for pulmonary atresia depend on the extent of the disease and other variables. Most likely, he will be admitted to Boston Children's Hospital's cardiac intensive care unit (CICU). Initially, he may be placed on oxygen or a ventilator to help him breathe, and IV (intravenous) medications may be given to help his heart and lungs function more efficiently.
Once he's stabilized, your baby's treatments may include:
Your child may need multiple surgeries or catheterizations in his early years. As he recovers and grows, be sure to follow a regular program of well-baby/well-child checkups.
After any procedure, your child will need to be followed by a pediatric cardiologist who will:
Your child's cardiologist will also offer recommendations for follow-up care, including:
As your baby recovers and grows, be sure to follow a regular program of 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.
An infant with single ventricle anatomy needs support with shunt-dependent blood flow between his Stage I and Stage II surgical repairs (see surgery descriptions above on this page).
The results of the Stage I surgery have improved—with nearly 90% of infants who are cared for in experienced centers discharged home after the first stage. So we can now focus new attention on reducing the known mortality of 10 to15 percent for these infants between their Stage I and Stage II surgical repairs.
Research shows the vital importance of a Home Monitoring Program, including daily at-home assessments of oxygen saturations and weight between the Stage I and Stage II surgeries.
Checking your baby's daily weight:
During this period between the Stage I and Stage II surgeries, your child's pediatric cardiologist and pediatrician will be in close contact with you as your child's primary home caregiver. (After your child's Stage II repair, this intensive level of home monitoring will no longer be necessary.)
In Boston Children's Home Monitoring Program:
Surgical techniques for PA and its associated defects are continually being refined, with the long-term outlook continually improving. Nevertheless, your child will need lifelong monitoring and medication, since he may be at some risk for arrhythmias, infections, leaky valves, heart failure or stroke.
Your cardiologist will help you create a long-term care program as your baby matures into childhood, the teen years and even adulthood. Most people who've had congenital heart disease repair will have an ongoing relationship with their cardiologist. 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 PA. How will it affect my child long term? What do we do next? We can connect you with a number of resources to help you and your family through this difficult time, including:
You'll be comforted to know that Boston Children's pioneered interventional catheterization for many congenital heart defects and is a leader in the use of this procedure.
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 the few in the United States—provides expert screening, evaluation and care for infants, children and teenagers with congenital heart disease who are at risk for neurodevelopmental problems. Care begins soon after your child's first cardiac surgery and continues as your child grows to make sure she's hitting her developmental milestones.
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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.”