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Dear Worried Parents: This Is the Upside of Down Syndrome

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Dear Worried Parents,

You just received some news that may be shocking — your baby has Down syndrome. Upon hearing the news, your entire world probably stopped. Your mind swirled with hundreds of questions and worries, none of which were eased by the doctor’s rambling or the pamphlet filled with statistics given to you. It may be hard for you to find out what it is like having a child with Down syndrome because you may have never met a person with Down syndrome before, or know anyone who has a family member with Down syndrome. I am writing to you to give you more information, because the birth of your child should be a time of joy, not a time of worry and stress.

Now you are probably wondering, what gives me insight on Down syndrome and the effects a child with Down syndrome can have on a family? Why should you listen to me? I have a younger sister Erin who has Down syndrome. She is 13 years old, and she is the most inspiring person I have ever met. My sister has brought my family closer together and has taught us all unconditional love.

Erin has inspired me to join numerous organizations to support people with Down syndrome, which has exposed me to many other families’ stories and experiences. For example I am involved in Gigi’s Playhouse of Rochester, an achievement center that provides free programming for people with Down syndrome. Through Gigi’s Playhouse I have met many amazing families who have incredible stories.  My entire life has been impacted by people with Down syndrome and their families, which has taught me the amazing effects a family member with Down syndrome can have.

I understand if you still have reservations. Through the rest of this letter I will address some of the common concerns about having a child with Down syndrome. I hope to ease your mind and show you the upside of Down syndrome.

I have come across many parents who worry about how a child with Down syndrome will affect their entire family. Having a child with Down syndrome definitely has an impact on a family, but the impact is positive. I will be the first to tell you I cannot even imagine my family without my sister Erin. She genuinely makes all of us better people, but it is not just my family who have had an amazing experience with their family member with Down syndrome.  According to a study published in the American Journal of Medicine and Genetics Part A, 97 percent of siblings report loving their sibling with Down syndrome, and 94 percent report feeling proud of their sibling with Down syndrome.

The worry you have now is completely understandable. Any big change in a family can be nerve-wracking, and you are not just responsible for yourself but also your children. Many parents felt the same way at first, but quickly see the positive effect their child has had on their family. Nancy, a mother of four girls, the youngest of whom has Down syndrome talked to Down Syndrome Pregnancy about how her husband was extremely worried about their other children when their daughter was born. Recalling the situation, Nancy wrote, “My husband has quite a different impression now, influenced mostly by the fact that our children fight like cats and dogs with each other, but are uniformly supportive, loving and delighted when it comes to Gabby.” This story shows how parents who at first have concerns can quickly realize the positive effects of having a child with Down syndrome.

My favorite discovery from the study is that 88 percent of older siblings report believing they are a better person due to having a sibling with Down syndrome. This is worth repeating: 88 percent of siblings, which is not a negative effect, nor even a neutral effect, but an overwhelmingly positive effect. From personal experience at Gigi’s Playhouse of Rochester I know this is true; almost all of the volunteers and board members are either a parent or sibling of a person with Down syndrome. Many of the volunteers I interact with started volunteering a Gigi’s Playhouse to give even more people with Down syndrome the same support and love they give their family member with Down syndrome. This is a common thread between many people who have loved ones with Down syndrome — they want to help spread positivity and love to even more people.

I want to congratulate you on the birth of your amazing child. I am excited for you to start this amazing journey. I personally know the joy a loved one with Down syndrome can bring to an entire family, and I want even more people to experience the same joy.  Thank you for taking the time to read my letter and consider my point of view.

Originally published: March 5, 2019
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