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At Boston Children’s Hospital, we understand that if your child has been diagnosed with Down syndrome, you may have a lot of questions and concerns about your child’s health and future. Every individual has unique strengths, talents, and skills. People with Down syndrome attend school, recreational activities, and work within their communities. People with Down syndrome can contribute to their family, friends, and society in many wonderful ways. Remember, it is difficult for any parent to predict what their child’s unique capabilities will be. We will help you to discover and nourish your child’s gifts, and to help you enable your child to reach their greatest potential.
Down syndrome is a common genetic syndrome caused by having all or part of an extra chromosome 21. The most common type of Down syndrome is also known as “Trisomy 21” due to the fact that there are three copies of this chromosome instead of the usual two.
There are three different types of Down syndrome:
Down syndrome can affect a child physically, cognitively, and behaviorally. Remember that every child with the condition is unique and may possess these characteristics to different degrees or not at all.
A child with Down syndrome will have some, but perhaps not all, of the following features:
Developmental, Cognitive, and Behavioral Symptoms
Q: What is Down syndrome?
A: Down syndrome is a common genetic syndrome caused by having all or part of an extra chromosome 21. The most common type of Down syndrome is also known as “Trisomy 21” due to the fact that there are three copies of this chromosome instead of the usual two.
Q: What causes Down syndrome?
A: Down syndrome is caused by the presence of extra chromosomal material. This happens during the time of conception. Instead of having the usual number of 46 chroosomes, a baby with Down syndrome typically inherits an extra copy of chromosome 21, and is born with 47 chromosomes. The extra genetic material results in physical and developmental changes.
Q: What are my chances of having a child with Down syndrome?
A: The chances of having a baby with Down syndrome increases with the mother’s age. Even though age alone can’t predict the number of pregnancies that will result in Down syndrome, this is the general guideline:
Prenatal testing for the condition is available to any expectant parent who desires that information.
Q: Do symptoms become progressively worse?
A: Down syndrome is not a progressive condition. Therefore, symptoms do not get progressively worse over time. However, some of the complications associated with Down syndrome can occur at different stages in a child’s life. While some symptoms are present when a child is born, others can emerge during childhood, adulthood, or in elderly patients.
Because different symptoms can emerge at different stages, it’s important to see a Down syndrome specialist who can determine what’s typical and what’s not typical for people with Down syndrome.
Q: Can my child with Down syndrome have children?
A: Although there have been rare exceptions, men with Down syndrome are not expected to be able to father a child. Women with Down syndrome may have decreased fertility. In any pregnancy, a mother with Down syndrome has about a 50 percent chance of conceiving a child with Down syndrome if the father does not have Down syndrome, though many pregnancies result in miscarriage.
Q: Does Down syndrome limit what my child can do?
A: Although your child may learn skills at a slower pace than children without Down syndrome, a child with Down syndrome should still be able to do most things that any young child can do, such as walking, talking, dressing and being toilet trained. Encouragement and support are the best tools to use to help your child reach developmental milestones. Early developmental therapies, such as Early Intervention, can help babies and toddlers with Down syndrome develop skills.
Q: Can my child go to school, despite having Down syndrome?
A: Yes. There are special programs beginning in the preschool years to help children with Down syndrome develop skills as fully as possible. Many children with Down syndrome can, to some extent, be integrated in the regular classroom. With Early Intervention and special education, the outlook for children with Down syndrome is far brighter than it once was. More and more people with Down syndrome attend college and work in their communities after graduating from high school.
Q; How serious is the cognitive and intellectual disability that accompanies Down syndrome?
A: The degree of cognitive and intellectual disability that accompanies Down syndrome varies widely, ranging from mild to moderate to severe. However, most cognitive and intellectual disability falls within the mild to moderate range. Not all areas of cognition are affected equally. Each person has unique strengths and weaknesses.
Q. What does “mild to moderate intellectual disability” mean?
A. Children with mild intellectual disability are usually able to do everyday things like read, hold a job, and take public transportation independently. Children with moderate intellectual disability probably need more support.
Q: What is the long-term outlook for my child?
A: The average life span for people with Down syndrome has increased dramatically since the early 1900s and many people with the condition achieve independence, hold jobs, and move into assisted living arrangements. Although there may be some challenges, with the right treatment and care, your child will have every opportunity to live a happy and fulfilling life.
Issues relating to school and education are usually a top concern for children with Down syndrome. Therefore, it is important to , seek out educational assistance programs as early as possible. Early Intervention and Special education services are provided through each community to children with disabilities. Our team can help you to navigate different options available to you. There are many different types of therapy and educational strategies that can help support learning, development, and behavior. Visit the Treatment tab to learn more about the various therapy options.
You will probably have a lot of questions on your mind before meeting with your child’s doctor. At the appointment, it can be easy to be overwhelmed with information and forget the questions you wanted to ask.
A lot of parents find it helpful to write down questions before the visit. That way, when you talk to your child’s clinician, you can be sure that all your concerns and questions are addressed. Your clinicians are also open to learning from families. You may want to share information that you have learned at conferences, and from your reading and experience.
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.”