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There are many ways you can help children and their families get the care they need.
All the members of the Cardiac Neurodevelopmental Program and the Division of Genetics here at Boston Children's Hospital are dedicated to diagnosing any complications that a child with velo-cardio-facial syndrome (VCFS) may experience, and developing the best therapeutic plans to manage them.
How is VCFS treated?
Treatment focuses on the health problems related to the syndrome. For this reason, the first step in the treatment process is a careful screening evaluation to check for underlying medical problems.
In addition to experts in the Division of Genetics and the Cardiac Neurodevelopmental Program, children with VCFS will be assessed by the following specialists:
How are the medical complications of VCFS treated?
Common problems that may require treatment include:
How is VCFS managed as the child grows?
If your child has VCFS, she'll need regular check-ups with her cardiologist throughout her life to monitor her heart. Your doctor's recommendations for managing VCFS may include:
What is the long-term outlook for children with VCFS?
With the proper treatment of heart defects, immune system disorders and other health problems, the majority of children with VCFS survive and grow into adulthood. However, children with VCFS generally need extra help throughout school and long-term care for their individual health needs.
Children with VCFS are at higher risk than usual for developing complex learning and behavioral problems. Nonverbal learning disabilities, speech production problems, and behavior and mood regulation difficulties are frequently seen. Attention and executive functioning difficulties are typically seen in children with VCFS. They maybe at higher risk for having behaviors associated with autism spectrum disorders. There is evidence that later in life children with VCFS have higher rates of severe mental health disorders including obsessive compulsive disorder, bipolar disorder, or schizophrenia. The occurrence of psychiatric disorders is higher for adults with VCFS, but medical researchers are still investigating the exact nature and risk of these disorders.
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.”