Caregiver to a 36F with Down Syndrome – please get prenatal screening so you have a real choice

Hi all,

This is not a pregnancy announcement. I am a 33-year-old brother and lifelong caregiver to my 36-year-old sister who has severe Down Syndrome.

She is nonverbal, fully dependent, and now also has post traumatic epilepsy after a fall. I have written in detail about her here:

• Adult with Down Syndrome (36F) – post traumatic epilepsy
• Follow up – meds update and caregiving offer

My parents are in their 60s and still doing hands on care. My wife and I handle meds, seizures, hospital visits and the emotional mess that comes with it.

I am not here to tell anyone what they must do with a pregnancy. But I want to say this very clearly:

Not because every DS life is worthless. Some people with DS have milder forms, can speak, work, have friends and joy. But many families live a very different reality that never shows up on Instagram.

My personal view after 33 years inside this:

• If my parents had known during pregnancy, they would probably have chosen not to continue.
• If I ever had a pregnancy with confirmed DS, I would likely terminate to spare a child this level of suffering and dependence.
• I love my sister deeply and still would not wish her life on anyone.

You may make a different choice. That is your right. My ask is simple:

• Get informed. Get screened.
• Hear stories from both sides.
• Then decide what you and your partner can live with for the next 50 years.

If anyone wants to understand what adult life with severe DS can look like, I am willing to answer questions or share more in DMs.