“What inspires me the most about children with Down syndrome is how incredibly strong and determined they are,” said Rebecca Olson, APRN-CNP, APNG, Down Syndrome Clinic at Children’s Minnesota. “I enjoy watching a tiny baby’s speedy recovery following open heart surgery, seeing a toddler running down the hall of the clinic after they initially had struggled to take their first independent steps, and hearing about a child’s most recent goals achieved at school. I love celebrating these accomplishments with my patients and know that there will be many more accomplishments to come!”
In honor of National Down Syndrome Awareness Month, Olson answered some questions many people have about Down syndrome.
What is Down syndrome?
Down syndrome, also known as trisomy 21, is a common genetic condition where a person’s cells have an extra chromosome. Chromosomes are packaging structures for our genetic information, and typically people have 23 pairs of chromosomes. One chromosome from each pair comes from the mother, and the corresponding chromosomes come from the father. Because chromosomes contain genetic information, having too many or too few can cause differences in growth and development. In cases of Down syndrome, the individual has three copies of chromosome 21.
How is it diagnosed?
Down syndrome is often recognized in babies shortly after they are born as care teams may notice facial features and medical differences. A blood test to look at the baby’s chromosomes is then done to confirm the diagnosis.
Ultrasounds or prenatal tests may also lead medical professionals to suspect a baby may be born with Down syndrome. Diagnostic testing can be done during pregnancy to confirm a Down syndrome diagnosis.
How does it affect kids?
Down syndrome affects all people differently, and they will all have their own unique needs.
When a baby is born, their care team can’t know how Down syndrome will affect them, so they have no way to predict the care they will need in the future. As that baby grows and develops, their care team will learn more about their strengths and weaknesses, and will ultimately be able to better support their needs.
Children with Down syndrome can have any of the following needs and issues: heart defects, thyroid differences, hearing loss, vision differences, low muscle tone, sleep apnea, feeding difficulties, seizures, autism and childhood leukemia, in addition to developmental delays or learning challenges of varying degrees. Some children may experience multiple health or developmental challenges, while others may have fewer, or may experience them to a milder degree.
What specialized care do kids with Down syndrome need?
Because children with Down syndrome are at an increased risk for certain medical challenges, it’s paramount to screen for and address these health problems early in life. Regular surveillance of hearing, vision, thyroid, growth and development is essential. Some children may also require surgical intervention for heart conditions, gastrointestinal problems, or hearing deficits.
The more medical professionals learn about individual patients, the better they will understand that person and can offer the specialized care that they need.
At Children’s Minnesota, we have a Down Syndrome Clinic that strives to provide the foundation children with Down syndrome need to grow up and lead healthy and full lives.
Help Me Grow
In Minnesota, a program called Help Me Grow offers free, in-home early intervention services to kids with Down syndrome from birth to age 3. The program helps with a child’s developmental progress with services including physical therapy, occupational therapy and speech therapy.
How can families support children with Down syndrome?
“They are children first,” said Olson. “They need what all babies, toddlers and children need: love and support from their families and caregivers.”
It’s important to provide children with Down syndrome with an enriching and loving environment so they can grow from amazing little kids to remarkable adults who live full lives and actively participate in their communities. Be patient, positive and supportive every step of the way.
“Children with Down syndrome are more like all of us than they are different. What makes a child with Down syndrome unique is about who they are as an individual, and not about their diagnosis.”
Specialized care at Children’s
The Down Syndrome Clinic at Children’s is the only clinic in the area to provide both inpatient and outpatient services to children with Down syndrome, including prenatal visits. We are dedicated to our patient’s lifelong health and well-being, and we often see patients and their families from birth to young adulthood.
Our developmental pediatrics and genetics clinicians are experts in caring for individuals with Down syndrome and provide comprehensive care, addressing health, developmental, and behavioral needs that may arise.