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Care for the Whole Lifespan: How to Optimize Care for People 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) are born in the United States with a genetic condition called Down syndrome. While babies are typically born with 46 chromosomes, babies born with Down syndrome have an extra full or partial copy of chromosome 21. For this reason, Down syndrome is also called Trisomy 21.

Common Characteristics of Down Syndrome

According to Dr. Stacy McConkey, a board-certified pediatrician specializing in Down syndrome, the extra genetic material changes the babies’ growth and development, and causes the common characteristics associated with Down Syndrome.

These characteristics include:

  • Low muscle tone
  • Short height/small stature
  • Short fingers and a single crease across the palm
  • Upward slanting eyes

However, like anyone else, every person with Down syndrome is unique and may possess these characteristics to different degrees, or not at all.

Health Care Needs for People With Down Syndrome

There are a variety of health problems that can be associated with the extra chromosome in Down syndrome as well, affecting individuals at different times in their lives starting at infancy.

Infants with Down syndrome can have:

  • Heart defects: Almost 50% of babies can be born with heart defects that may require surgery. Therefore, it’s important to screen each baby soon after birth for any issues with their heart
  • Feeding problems: Low muscle tone can cause feeding problems for infants which can make it difficult for them to get the proper amount of food to support their growth. Speech feeding therapy is often used to help these babies gain the proper skills
  • Digestive blockage: Infants can be born with blockage of their intestines; depending on the individual, they may require surgery. Many with Down syndrome also suffer from constipation, which can be helped with medication and dietary changes
  • Slow development: Low muscle tone affects infants’ ability to accomplish some of the developmental tasks at the same pace as typically developing children. Children can be delayed in gaining skills for moving, coordination and speaking. This requires extra support and therapies at an early age - physical therapy and occupational therapy help children acquire the skills and strength to accomplish developmental milestones
  • Hormone deficiencies: All people with Down syndrome should be regularly screened for low thyroid levels. Low levels of thyroid hormone affect growth and development in infancy, or body functions in older individuals
  • Vision and hearing: Infants can suffer from cataracts (cloudiness of the lens of the eye) and later require glasses, and hearing can be affected by retained fluid in the middle ear, which is related to facial features. All babies with Down Syndrome need to be evaluated by an ophthalmologist (eye doctor) and have a hearing screen soon after birth
  • Ear and sinus infections: People with Down Syndrome have faces that are often small or flattened in the middle. Crowding of the structures in the middle of the face can cause difficulties with drainage of mucous or fluid in the middle ear, causing recurrent ear and sinus infections

Dr. McConkey shares, “Once it has been identified that your child has Down syndrome, it’s important to connect with a team of doctors and therapists and get appropriate testing to determine what health concerns your child has. Early identification of their health care needs is critical to ensuring that each child can develop to their full potential.”

The Role of Family in Down Syndrome Care

Down syndrome is a lifelong condition. Getting your child the right care is essential to maximizing their growth and development.

“At first, the number of doctors, testing and therapies can seem overwhelming, but with the help of your pediatrician or family care doctor, you can navigate the care your child needs, and the timeline of when it should be accomplished,” Dr. McConkey says.

In addition to their health care, find classes and activities that let your loved one explore and develop their interests and allow them to socialize.

It’s also important to make sure your needs are met, too. Consider joining a support group or association either in person or online, as they can help you meet others in the Down syndrome community. You should also remember to make time to relax and spend quality time with family and friends.

Whole-Person Care for the Whole Lifespan

You can set your loved one with Down syndrome up for success to live a long and happy life, and we’re here to support you on this care journey from diagnosis into adulthood.

Learn about our Lifespan Down Syndrome Program and how we can partner with you at AdventHealthforChildren.com/DownSyndrome.

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