If your child has Down syndrome, OHSU’s Child Development and Rehabilitation Center can help your child thrive. We offer:

• The largest Down syndrome program in the Pacific Northwest and the only dedicated clinic for children with Down syndrome between Seattle and the San Francisco Bay Area.
• A team with advanced training and deep experience in managing Down syndrome and related conditions.
• Care from before birth through age 21, with specialists who can treat conditions related to Down syndrome.
• Full evaluations and annual checkups.

Children with Down syndrome have health and developmental concerns that need coordinated care. Our team at the CDRC, part of OHSU Doernbecher Children’s Hospital, can help you and your child’s main doctor manage this care.

What is Down syndrome?

In Down syndrome, a baby is born with 47 chromosomes in each cell instead of the usual 46 chromosomes (23 pairs). The extra chromosome is a third copy of chromosome 21, so Down syndrome is also called trisomy 21.

Chromosomes contain our DNA, which is organized into units called genes. Our genes control how we develop and grow. Having an extra chromosome affects how a baby’s brain and body form.

Who has Down syndrome?

Down syndrome is the most common chromosomal disorder and the most frequent cause of learning delays. About 6,000 babies are born in the U.S. with Down syndrome each year. That’s about one in every 700 births.

What causes Down syndrome?

Three kinds of genetic changes can cause extra chromosomes:

• Full trisomy 21: This is also called non-mosaic Down syndrome. Cells have three copies of chromosome 21, instead of two.
• Translocation Down syndrome: Part of chromosome 21 attaches to another chromosome, creating three copies of the genetic material in chromosome 21.
• Mosaic Down syndrome: Some cells have an extra copy of chromosome 21, while other cells have the usual two copies.

Evaluation

We will need a referral from your child’s main doctor.

Your visit will last three to four hours. We may need lab tests or X-rays, which we can do the same day.

Your family will meet with specialists, including:

• A pediatric neurologist, for a full medical evaluation.
• An audiologist, to test hearing.
• An occupational therapist, for skills used in play, school and work.
• A physical therapist, for motor skills, strength, posture and balance.
• A speech-language pathologist, for speech and language skills, and feeding problems.

Managing Down syndrome

Our team provides a full evaluation and custom plan to manage your child’s issues and your concerns. If your child needs therapy and you live in the Portland area, we may recommend working with our team. You can also take the plan to your child’s doctor for care close to home.

Your child’s plan may include one or more types of treatment:

Health checks

Down syndrome can increase the risk of other health conditions, so well-baby and well-child visits are important. We recommend routine care, such as vaccinations, and regular checks on your child’s:

• Growth
• Digestive system
• Heart
• Lungs
• Skin
• Hearing and vision
• Muscles and skeleton
• Sleep
• Teeth
• Thyroid function

Feeding

Babies sometimes need help with breastfeeding or moving to solid foods. Our occupational therapists and speech-language pathologists can:

• Evaluate your concerns.
• Refer your child for tests, such as a swallow study, or therapy.
• Refer you to a lactation specialist.

Physical therapy

A physical therapist can help with low muscle tone, which is common in children with Down syndrome. Activities and exercises build your child’s strength, develop motor skills, and improve posture and balance.

A physical therapist can also evaluate whether devices that support the feet (orthotics) would help your child.

Occupational therapy

An occupational therapist can work with your child to improve skills for daily acts such as eating, dressing and writing.

Speech-language therapy

A speech-language pathologist can help your child improve speech, language and communication skills with methods that include:

• Building up muscles for speech.
• Improving speech and vocabulary.
• Using assistive technology to communicate.
• Creating a therapy plan at CDRC or near your home.

Behavioral and mental health care

A social worker can help your family find extra care.

We can also refer you to pediatric psychologists and psychiatrists who can help your child learn to manage emotions, and to build coping and social skills.

Other specialists

We can refer you as needed to other OHSU experts in:

• Ear, nose and throat care (otolaryngology; also called ENT)
• Heart care
• Digestive disorders (gastroenterology)
• Sleep medicine
• Dental care
• Feeding
• Eye care
• Cancer and blood disorders

Our recent research includes studying these issues in babies and children with Down syndrome:

• Muscle movement (motor skills development)
• Eating, sleep and thyroid problems
• Obesity

Learn more

• Children with Down syndrome, American Academy of Pediatrics
• Down syndrome, National Institute of Child Health and Human Development
• Facts about Down syndrome, Centers for Disease Control and Prevention

Resources

• Down Syndrome Network Oregon
• National Down Syndrome Society
• Northwest Down Syndrome Association

Our team

Our providers are also:

• Scientists who want to improve care for children with Down syndrome.
• Researchers who present findings in papers and at national conferences.
• Educators who train the next generation of providers how to manage issues related to Down syndrome.