Down Syndrome: First Steps After Diagnosis
New Down syndrome diagnosis? Ability Central breaks down your first steps, including understanding treatment options and care guidelines.
By Ability Central
12 April, 2023
About 6,000 babies in the United States are born with Down syndrome each year. This article will cover the first steps after receiving the diagnosis, including:
- How accurate are the tests during pregnancy?
- What should new parents know about raising a child with Down syndrome?
- What are the treatment options for a person with Down syndrome?
- Are there guidelines for the care of someone with Down syndrome?
- What are the communication aids available for people with Down syndrome?
- Where can I get more information about Down syndrome?
How accurate are the tests for Down syndrome during pregnancy?
Screening tests in the first trimester can inform parents about the likelihood of having a child with Down syndrome. Blood and ultrasound testing offers detection rates from 80 to 90 percent.
Chorionic villus sampling (CVS) and amniocentesis, which carry up to a 1% risk of causing a spontaneous termination (miscarriage), are nearly 100% accurate in diagnosing Down syndrome.
To learn more about these tests, see Down Syndrome: Symptoms and Early Signs.
What should new parents know about raising a child with Down syndrome?
The National Down Syndrome Society (NDSS) says, “It is natural to experience denial, anger, depression, and other stages of grief as you adjust to the news that your baby has Down syndrome. Even for parents who knew they were at a higher risk of having a child with Down syndrome or have received a positive diagnosis, acceptance can be difficult or, at first, seem impossible.”
Luckily, there are multiple ways of receiving support. Connecting with support groups, other parents, and fellow caregivers can be an essential first step. See Down Syndrome: Planning for Long-term Care.
What are the treatment options for a person with Down syndrome?
There is no specific treatment for Down syndrome, but there is a wide range of physical and developmental therapies designed to help people with Down syndrome access their full potential.
According to the Mayo Clinic, early intervention can significantly improve the quality of life for a person with Down syndrome. Different stages of life may require different services.
Treatment options may include the following:
- Physical or occupational therapy
- Speech therapy
- Participating in accessible education programs
- Treating underlying medical conditions
- Wearing glasses or assistive hearing devices as needed
Are there guidelines for the care of someone with Down syndrome?
The American Academy of Pediatrics (AAP) has developed specialized healthcare information for families of children with Down syndrome. These guidelines define the standards of quality care for people with Down syndrome, and they span from prenatal through age 21. For additional details about the guidelines, see the NDSS website.
What are the communication aids available for people with Down syndrome?
People with Down syndrome can have difficulty being understood for many different reasons. According to the Down Syndrome Resource Foundation (DSRF), common communication issues include phonology, articulation, apraxia, and dysarthria. To aid in this, they recommend using Augmentative and Alternative Communication (AAC) devices. To learn more, check out their website.
For many people with Down syndrome, these disorders create difficulty communicating effectively. This can have a substantial impact on independence and quality of life, often leading to exclusion and discrimination. Organizations like the Down Syndrome Connection of the Bay Area offer low- and high-tech solutions that empower people with Down syndrome to access their right to communication and information.
Ability Central offers a nationwide database of organizations that offer support and services to people with Down syndrome and their families and caregivers. You can search it here.
Where can I get more information about Down syndrome?
Ability Central offers a series of articles to further your knowledge about Down syndrome. See:
- Down Syndrome: Seven Quick Facts You Should Know
- Down Syndrome: Symptoms and Early Signs
- Down Syndrome: Planning for Long-term Care