Fears and thoughts after a birth diagnosis

What a cutie! Henry is one of our featured kids leading up to our World Down Syndrome Day celebration on 3/21 at the Playhouse. Hear about Henry and their birth diagnosis through the eyes of his mom and dad. All three of them are true treasures within our community.

This is Henry. He just turned 3. We had a birth diagnosis, and were pretty sad and scared at first. We really didn’t fully understand what that meant. My fears were immediately about his health. I thought it meant he was going to have a very short life. My misconception was that people with Down Syndrome die young. My husband’s big sadness revolved around the way the world would view Henry and the way Henry would be treated. It was a few dark days in the NICU for us. Thankfully my sister researched a ton about it for us and got us connected to mentor families.

When I had my follow up appt with my OB/GYN, Dr. Kathryn Kostic, she told us about GiGi’s and what a wonderful place it would be. She really also had the attitude that Henry having Down Syndrome was really no big deal and that we were going to be fine! Also, early on a dear friend of mine-sounded so excited for us and really said she knows we hit the jackpot and her pure happiness for us was so hopeful.

In those first few months, we were connected with so many wonderful families with children with Down Syndrome and I remember scouring the internet to find stories of hope. I also loved coming to GiGi’s when Henry was just a wee baby to see all the exciting things the older children with Down Syndrome were doing. Now 3 years later I can’t believe I was ever sad about the diagnosis, I still get worried about health-related issues, but can’t believe what a treasure we have in HENRY. He is just such a gift. I guess it is true that I still worry about Henry’s health (even though he is overall very healthy) and my husband worries how the world will treat him (even though it appears Henry is pretty loveable), but we know every parent worries. Our lovely daily life with Henry keeps us from thinking too much about that because he is just a joy.

Our hope for Henry is that he will be offered every opportunity to light up this world. He is starting school and we are terrified, but are hopeful that his guides at school will love him and understand their importance in Henry’s journey! Henry loves all things music and loves trying to play all of Daddy’s instruments. His speech therapist loves it and we have a blast with him!
-Mom, Trinny, Dad, Glenn & Henry

Do you want your kiddo featured in upcoming social media posts and on our website leading up to World Down Syndrome Day (3/21)?

Email us a story about your child and include a picture to be added to our outreach platforms milwaukee@gigisplayhouse.org.

The first 10 entries will be put into a drawing for some GiGi’s Milwaukee swag! The second group of 10 will also be entered into another drawing and so on! We want to hear from you!


Find out more on our Facebook post

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