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There are many ways you can help children and their families get the care they need.
The DORV defect is challenging to treat. But the dedicated, compassionate team at Boston Children's Hospital is well-qualified to care for your child.
We’re known for our science-driven approach. In fact, we’re home to the world's most extensive pediatric hospital research enterprise; and we partner with elite health care and biotech organizations around the globe. But as specialists in innovative, family-centered care, our physicians never forget that your child is precious, and not just a patient.
There are four major types of DORV defect, which can be classified by the location of the hole (ventricular septal defect or VSD) with respect to the aorta and the pulmonary artery. The most common of these types is a DORV where the VSD is located:
The location of the VSD also defines the other three types of DORV. These other types locate the VSD:
These four types of DORV—as well as the presence or absence of associated pulmonary stenosis and other defects—will determine how severe your baby’s condition and symptoms are.
Additional but somewhat less common defects that may be present with DORV include:
It’s important to understand that as parents, you’ve done nothing to cause DORV and its accompanying defects. Nothing you've ingested or have been exposed to environmentally has been linked to having a child with DORV. Congenital heart defects usually occur sporadically (by chance), with no clear reason for their development.
In infants and babies:
In older children:
Call your health care provider immediately if your baby or child is having difficulty breathing or is breathing rapidly, has a bluish color, tires easily or is uninterested in eating.
Congenital heart defects usually occur sporadically (by chance), with no clear reason for their development. So, it’s difficult to predict who’s at risk. Familial cases have been reported. Occasionally, chromosomal abnormalities have been found in some children with DORV.
Children who've undergone DORV repair could be susceptible to congestive heart failure, or lung damage resulting from high blood pressure in the lungs. However, with improved treatment techniques and follow-up care, these complications are becoming increasingly less common.
There’s a risk of arrhythmias occurring, especially for patients who've had their repairs later in life. And some people who've undergone DORV repair will require lifelong medication to prevent heart infections.
The large majority of DORV defects can be corrected, so the outlook for your child is good. Arrhythmias and other long-term complications can occur—particularly if patients undergo repair at a later age—but these are usually manageable.
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 have had congenital heart disease repair have an ongoing relationship with their cardiologist; we will consult and treat your child if complications arise, and will advise on daily-life issues such as exercise, activity levels, nutrition and pregnancy precautions.
Open heart surgery at Boston Children’s has among the highest success rates in the United States among large pediatric cardiac centers. With our advanced surgical techniques and timely, family-centered care, the overwhelming odds are that your child will have a successful surgical DORV repair.
Note: Infants who’ve had initial surgery for a single ventricle defect are typically enrolled in Boston Children’s Home Monitoring Program between the baby’s Stage I and Stage II operations in the Fontan sequence.
We've found that the large majority of DORV defects can be corrected. Abnormal heart rhythms and other long-term complications can occur—particularly if patients undergo repair at a later age—but these are usually manageable.
Your cardiologist will help you create a long-term care program as your baby grows 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 will consult and treat your child if complications arise, and will advise on daily-life issues such as exercise, activity levels, nutrition and pregnancy precautions.
BACH is an international center for excellence, with physicians and services from Children’s, Brigham and Women’s Hospital and Beth Israel Deaconess Medical Center. The center promotes and supports clinical and scientific research for the advancement of care of these patients, and is a leader in the education of providers caring for this unique population.
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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.”