A Down syndrome diagnosis changes a lot at first. Whether before or after birth – it takes time to process this. That is normal, and you are allowed to feel it.
Down syndrome (trisomy 21) means that chromosome 21 is present three times instead of two. It is not a disease, but a genetic variation.
In Germany, approximately 800–1,000 children with Down syndrome are born each year. It is the most common chromosomal variation.
Frequency
approx. 1 in 800 births
Cause
extra chromosome 21
Types
Free trisomy (95%), translocation (3–4%), mosaic (1–2%)
Life expectancy
today on average over 60 years
- ✓ Take your time. You don't have to decide anything or google anything right now.
- ✓ Cry if you need to. Grief and joy can exist at the same time.
- ✓ Talk to each other – as a couple, with family, with friends.
- ✓ Don't let statistics and medical checklists scare you.
- ✓ Connect with other DS families – the exchange can really help.
- ✓ Look at your child. First and foremost, this is your child – with everything that comes with it.
With a prenatal diagnosis, you have the right to open-ended counseling (§ 2a Schwangerschaftskonfliktgesetz – Pregnancy Conflict Act). This means: nobody is allowed to push you in any direction.
Pro Familia Ulm
Psychosocial counseling for prenatal diagnostics
Available for all questions regarding prenatal diagnostics – confidential and open-ended.
Tip: The German DS-InfoCenter has a brochure specifically for parents who receive the diagnosis during pregnancy. Available for free at ds-infocenter.de.
Außergewöhnlich
Conny Wenk – Stories from fathers
Down-Syndrom – Mein Leben mit dem Extra-Chromosom
Paluten – Children's book
Unser Kind hat Down-Syndrom
DS-InfoCenter – Guidebook
Most books are available at the Ulm City Library.
We are here for you
At DownKids Ulm, families meet who have had similar experiences. You are welcome – anytime.
Write to us