Down Syndrome

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Down Syndrome

Compassionate Trisomy 21 Care

Happy girl being cared for by Nemours Down syndrome experts.

Down syndrome is caused by the presence of an extra chromosome. Chromosomes are made up of genes that determine all the traits about your child. Children usually get 23 pairs of chromosomes from their parents. Kids with Down syndrome are born with an extra copy or fragment of chromosome 21 (which is why Down syndrome is also called “trisomy 21”).

This extra chromosome can cause delays in physical and mental development. But that doesn’t mean your child can’t live life to the fullest — especially when you have the right care team in your corner. Each child with Down syndrome is special and has unique needs. That’s why our specialists at Nemours work together — so your child can get all the care they need, all in one place.

Down Syndrome Services We Offer

We’re here to help address your child’s medical, developmental and social needs at every stage of life. Our services, which may vary depending on your child’s needs and the location you visit, may include care from experts in:

Why Choose Us for Down Syndrome Care

At Nemours, we provide the many Down syndrome specialists and resources you and your family may need. That includes:

  • ongoing follow-up care to prevent and address other conditions that may come with Down syndrome (like low muscle tone, pulmonary hypertension, and hearing or vision problems)
  • social, emotional and psychosocial (psychological and social) support for your child and family
  • help with insurance, transportation and other concerns outside of the hospital

Families also have access to the Nemours Cardiac Centers (in Delaware and Florida). Heart conditions are more common in kids with Down syndrome, so this is a vital service. Our cardiology and heart surgery teams work with our on-site Down syndrome specialists to evaluate and regularly monitor children for congenital (present at birth) heart defects. With early diagnosis and advanced treatment, we can do a lot to protect your child’s heart now and in the future.

Regional Down Syndrome Care Highlights

Services, programs and care teams differ at each location. Call for details.

Our Down syndrome program at Nemours Children’s Hospital, Delaware (Wilmington, Del.) is dedicated to helping your child reach their full potential by providing coordinated care from a team of specialists. We also offer perinatal services to diagnose conditions like Down syndrome in the womb before birth, and work with you to come up with a plan of care after delivery. And, if you need it, the Ronald McDonald House of Delaware is right across from our hospital’s campus and offers a safe and affordable home away from home so you can focus on your child’s care.

Nemours Children’s Hospital (Orlando) is dedicated to helping your child reach their full potential by providing coordinated care from a team of specialists. Through our maternal-fetal medicine services, we can also diagnose conditions like Down syndrome before birth and work with you to come up with a plan of care for after delivery. And, if you need it, the Ronald McDonald House at Nemours Children’s Hospital provides a home away from home for families to stay together, right next door on our campus.

Our hospital is also home to the annual Florida Down Syndrome Conference, organized by the Down Syndrome Association of Central Florida . Every year, nationally recognized leaders in Down syndrome offer education, tips and resources covering medicine, health and advocacy.

Patient Stories

Franki tells the story of her treatment at Nemours for Down syndrome

Sometimes the best support and peace of mind comes from families who’ve been there.

Meet Franki »

Research & Clinical Trials

At Nemours, we’re actively researching new approaches for childhood disease prevention, diagnosis and treatment.

KidsHealth Library

Learn more about your child’s medical condition from the experts at Nemours’ KidsHealth.