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The Spectrum of Care: Optimizing Health Care for Individuals With Down Syndrome

A Child with Down Syndrome Smiles While he and his Mother Look at Content on an iPad

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Each year, about 6,000 babies (roughly 1 in every 700 babies) are born in the United States with the genetic disorder Down syndrome. While babies are typically born with 46 chromosomes, babies born with Down syndrome have an extra copy of one specific chromosome — chromosome 21. For this reason, Down syndrome is also called Trisomy 21.

This extra chromosome affects how the baby’s body and brain develop, which causes both physical and mental challenges.

Health Care Needs of People With Down Syndrome

Some babies born with Down syndrome are also born with other medical problems, such as ear infections and hearing loss, eye infections and obstructive sleep apnea, which occurs when a person temporarily stops breathing while asleep.

Respiratory infections in people with Down syndrome are also more common, especially during the first five years of life, and nearly half of all people born with Down syndrome are born with heart defects.

Still, all the health issues that affect people with Down syndrome affect the rest of the population, too, which means advances in modern medicine have made treatments available and effective for babies born with heart defects and other medical issues.

Doctors also regularly monitor babies born with Down syndrome for symptoms of other conditions, and they connect babies and children with Down syndrome with intervention programs and services early in life. Services typically include speech, occupational and physical therapy.

Personalized Care for Down Syndrome

People with Down syndrome often look and act similarly.

Common physical features of people with Down syndrome include:

  • A flattened face
  • A short neck
  • A shorter stature
  • Almond-shaped eyes
  • Poor muscle tone
  • Small ears
  • Small hands and feet

People with Down syndrome also usually have a mild to moderately low intelligence measure (IQ).

Yet despite these similarities, each person with Down syndrome has different needs and abilities. That’s why there is no single treatment for Down syndrome. Rather, treatment aims to address the diverse health challenges each person with Down syndrome faces. For instance, people with Down syndrome who have a thyroid disorder may require different care and treatments than those born with a vision disorder.

The Role of Family in Down Syndrome Care

Down syndrome is a lifelong condition. If you’re caring for someone with Down syndrome, one of the most important things you can do is learn as much about the condition as possible. It’s also important to listen to your loved one’s doctor about their specific health challenges.

In addition to coordinating doctor’s appointments and therapy sessions, find classes and activities that let your loved one explore and develop their interests and allow them to socialize.

It’s important to make sure your needs are met, too. Consider joining a support group either in person or online, as they can help you meet others in similar circumstances. You should also make time to relax and make time for family and friends.

You can help your loved one with Down syndrome live a long and happy life. Adults with Down syndrome can work, develop meaningful relationships and sometimes live independently. Down Syndrome Awareness Month is recognized each October and acts as a time to celebrate the abilities and contributions people with Down syndrome share with society.

A primary care provider can help you navigate your loved one’s Down syndrome diagnosis. Learn about primary care at AdventHealth.

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