What I wish I was told about my daughter’s Down syndrome

“I’m so sorry. Your baby has Down syndrome. Would you like to terminate?”

More often than not, these are the words that parents receive when a Down syndrome diagnosis is being delivered to them. My husband and I were out of town, visiting his mother in the hospital who was passing from cancer, when we received the life altering phone call: “Your baby has a 98% chance of  having Down syndrome.”

I was 12 weeks pregnant with my third child, and this was the last thing I had expected. Even though I had a background as a Registered Nurse, and my husband is a physician, neither one of us knew much about Down syndrome, other than the various medical complications that can possibly accompany this condition. And neither one of us actually personally knew anybody with Down syndrome.

Upon receiving this life altering news, I felt terrified, disappointed, and honestly, devastated. I thought my life was over with. But today, roughly three years later, my life is anything but over with.

In fact, it is better – all because of the beautiful and amazing little soul who we named Arabella, which means “yielding in prayer”.

Here is what I wish doctors would tell a mom or dad as they are delivering a Down syndrome diagnosis:

1. “Congratulations on your baby.”
2. “Your child is a unique individual. Not everybody with Down syndrome is the same.”
3. “There isn’t a lot of research that has been done on Down syndrome, and a lot of the information out there is based on outdated, biased and inaccurate ideas and data.”
4. “Your child will likely have cognitive disabilities, but the majority of those with Down syndrome will learn to read and write. Most are attending public schools. Many hold down regular jobs, and some even go on to complete college.”
5. “People with Down syndrome are significantly more prone to certain types of health conditions, including heart defects, ear infections, hypotonia, sleep apnea, and Alzheimer’s disease. But each person is an individual, and many with Down syndrome are healthy overall, so your child may or may not have these conditions. But many of these ailments are treatable. And by knowing what conditions they are more at risk for, we can screen early for these things and be prepared to treat them if they are to arise.”
6. “98% of people with a sibling with Down syndrome felt that they were better people because of their sibling. And parents of children with Down syndrome divorced less than parents of typical children.”
7. “This is a family who has a child with Down syndrome, and they would be more than happy to talk with you. Here is their contact information.” (Our Pediatrician actually did this with us!)

I really hope that the narrative and the stigma surrounding Down syndrome changes, and I strongly believe that it starts in the doctor’s office where the diagnosis is first given.

Thank you, Tiffany, for sharing your story with The Ribbon Box.

Not only is it important for medical professionals to mind their messaging when sharing life-altering news with expectant parents, but it’s also essential we consider the language we use when speaking about neurodiverse individuals. It’s okay if we get it wrong, but we must be open to learning new ways of talking about our differences.

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