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At Boston Children's Hospital, we know that the first step in treating your child is to form an accurate diagnosis. If there’s a history of Marfan syndrome in your family, your doctor may perform tests soon after your child is born. But in many cases, it’s easier to diagnose Marfan syndrome as your child gets older, since many of its features—like tall, thin stature and unusually long arm span—become more apparent with age.
There’s no single test to diagnose Marfan syndrome, and the condition can be especially hard to diagnose in children. It’s rare for a young child to be definitively diagnosed with the condition, since:
Usually, a child with suspected Marfan syndrome will be carefully monitored, so that any developing symptoms can be detected and treated as soon as possible.
These tests may show whether your child has the defective gene, but they can’t indicate how severe her Marfan syndrome will be. And the severity of the syndrome in the parent who has the condition doesn’t indicate how severe the syndrome will be in the child, either.
Diagnostic tests can include:
Your child’s pediatrician, your family doctor or an orthopedist (bone specialist), may notice certain traits—like the long bones in your child’s body growing more than is normal—that suggest she may have Marfan syndrome.
If that happens, the doctor will likely refer your child to a clinical geneticist (hereditary disease expert, usually an MD or PhD) or cardiologist (heart specialist)—two specialists that usually have the most experience working with children who have Marfan syndrome.
After reviewing their findings, your child’s team of specialists can determine whether she has Marfan syndrome. Here at Boston Children’s, we view your child’s diagnosis as a starting point: We’re now able to treat her with all the means at our disposal—so that we can effectively manage her condition.
Partnering with the National Marfan Foundation
Boston Children’s is actively involved with the National Marfan Foundation, which provides research, education and support services to families and children with Marfan syndrome.
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.”