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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 condition, we're able to begin the process of treating her, so that we may ultimately return your child to good health.
How we treat your child depends on her combination of heart defects. The associated defects—and their relationships to each other—largely determine which procedures we perform. At Boston Children's Hospital, we rarely perform palliative or temporary operations; for any age or size, we prefer to do a corrective procedure.
Your child may have a:
Despite these several variations, the common surgical goals for DORV are to
These goals can be addressed through a variety of surgical approaches, including, but not limited to:
A tunnel from the VSD to the pulmonary artery is created, connecting the left ventricle to the pulmonary artery. Then, the vessels are disconnected and reconnected so that the pulmonary artery becomes the aorta, and the aortic valve is connected to the pulmonary artery, and associated holes between the chambers of the heart are closed.
Your child's cardiologist will offer recommendations for post-operative follow-up care, including:
We'll also help you to create a longer-term care program as your baby grows into childhood, the teen years and even adulthood. Most persons who've had congenital heart disease repair will have an ongoing relationship with their cardiologist. We will consult and treat if complications arise, and will advise on daily-life issues such as exercise, activity levels, nutrition and pregnancy precautions.
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:
Because of the complexity of double outlet right ventricle, your baby's recovery and prognosis can depend on many variables involving the VSD, the pumping chambers (ventricles) and additional defects.
Nevertheless, Children's cardiologists and surgeons are confident that the great majority of DORV defects can be repaired. Arrhythmias and some other long-term complications can occur—particularly if patients undergo repair at a later age—but these are usually manageable.
Thanks to ever-improving diagnoses and treatments for the DORV defect, damage to the baby's blood vessels or lungs is now rare. And the medical science on congenital heart defects continues to evolve and improve.
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 The 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 DORV. 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:
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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.”