New Baby Diagnosed with Down Syndrome--What Do I Say (Part II)?

Down Syndrome Diagnosis 101, What to Say to Others

Does your new baby have Down syndrome?  Have you wondered how to tell others about it? 

As parents, it is tough enough to navigate our own feelings when our child is diagnosed with Down syndrome, let alone manage other people's reactions. We've all wrestled with how and when we should reveal our child's diagnosis to others.  

We chose to adopt Alina, and everyone knew that she had Down syndrome.  But Bridget's diagnosis was a surprise.  Our first challenge was making calls from the hospital, and filling in all the details of her birth.  We were shocked, and still reeling from the additional stress that Bridget needed surgery as soon as she was born.  

Our next challenge was her birth announcement.  We felt we should tell our family and close friends about Bridget's diagnosis, and spent some time thinking about what to say, but thought they definitely needed to know.  Here is what we sent:

B R I D G E T

 Celtic meaning:  Strong, Resolute, Saint

                          

Dear Family and Friends,

For those of you who do not already know the events of the last several weeks, I thought I should explain…  

My water broke early in the morning on July 23 at just over 34 weeks into my fifth pregnancy.  We anticipated a quick delivery, and hurried to the hospital, but my labor (which was slow and steady) lasted most of the day. Just before 6 p.m., Bridget was born. Our beautiful little girl was pink, crying, moving vigorously and breathing completely on her own.  

As soon as she was born, though, we recognized that Bridget had an enlarged area by her umbilical cord. We learned right away that she would need surgery to correct the omphalocele (in her case, a small section of the small intestine was outside her abdomen and had to be placed back inside), and that she would be transported to Children’s Hospital later that night. In addition to the abdominal issue, we were told that Bridget displayed other characteristics typical of a baby with Down syndrome.  

We did not know any of this before she was born. The anxiety and worry about Bridget’s surgery and overall health were really tough at first and we went through the range of thoughts and emotions while adjusting to--and accepting--our new reality. As soon as we got to spend time with Bridget, though, the clouds parted. Chris and I looked at each other and smiled. She’s one of us…and she’s a perfect addition to our family.  

Please don’t be sad for us. We are not sad or disappointed. We hope you will feel the same as we do--we’re happy and proud!  

Bridget is a sweet baby and her name suits her perfectly. She's filled with quiet determination. She is so pure, and so strong (body and spirit)--she is amazing.  

Bridget recovered quickly from her surgery and spent several weeks working on feeding (a common issue in preemies and babies with Down syndrome). She exceeded the doctor’s expectations at every turn and touched us all with her sweet disposition and her vigor at the same time. She came home after one month in the hospital to much fanfare and we are enjoying her immensely. 

She is doing everything babies do at this point (mainly eating, sleeping and pooping--sometimes all at once!). She's about 6 1/2 pounds now, and eats like a champion. She loves her siblings and seems so happy to be at home.  

We look forward to sharing Bridget with all of you as she grows.  

Love,  

 Lisa & Chris

There was relief after sending out her birth announcements.  They were well-received and people were incredibly kind and supportive.  

But it was still hard to know how to talk about Bridget's diagnosis in public.  I remember thinking, "Am I required to tell ____ that Bridget was born with Down syndrome?" (Sometimes it was a friend I hadn't seen in a while, or a stranger in the grocery store, or even an acquaintance at the dance studio or the school.)

I wasn't sure what to say, or how to say it. And then there were the many things people said to me that threw me for a loop.
 
So how do you talk to someone about your child's diagnosis for the first time?  What do you say when someone casually asks about some facet of your child having Ds?  Do you have a quick comeback when someone makes an insensitive or ignorant statement?  Or, do you have comments "in the bag" for just such an occasion?

I decided that I would tell people if I felt like it, and if it made sense. If I didn't feel like explaining, I just didn't say anything about her diagnosis. And I made a promise to myself that I would not feel badly about that. In other words, I started to cut myself some slack. 

I am a great advocate for Bridget and Alina. I love them and believe in them wholeheartedly, and will speak up when it makes sense to do so--but I don't always have to take on the world. (Some of our best advocacy work is just being out there, providing one example of a loving family living a happy and full life which includes Down syndrome.)

People make insensitive comments so often without even realizing it.  When Bridget was a baby, and I was still trying to absorb her diagnosis and figure out how to tell others about it, I started to understand that we all need to find things to say that fit our personality as well as the situation.

I used to just stand there--a little stunned--when someone made a comment that hurt (you can't always see it coming). You replay the situation in your head for days, trying to figure out what you should have said.

I now have all sorts of statements in my "bag".  I'm usually straightforward and positive, and I remind myself that each of these situations is a chance for me to advocate for my girls and for other people who have a diagnosis of Down syndrome (really, for people with a diagnosis of any type).

It is important for all of us (parents and family members) to be well versed on the basics (why Ds occurs, the range of delays associated with the diagnosis, physical features, common health issues, improvements in medical care for people with Ds, current terminology, new opportunities & advancements, etc.).  People will ask about those things. Most people will not have personal experience related to Down syndrome.  Your child might be the first person they've encountered with the diagnosis.

Here are some ideas:

If someone seems to be wondering whether she has a diagnosis, I'll just come right out with it: "Bridget has Down syndrome". In case they can't see for themselves, I always follow with: "She is awesome".

I often ask the person if they have any questions about her diagnosis. It takes some of the stigma away when we don't make excuses or apologies. (She is who she is, and she is amazing.)

When people comment about physical features or health issues ("she doesn't look like she has Down syndrome" or "she is so high-functioning...she must not have a severe case"), I say, "There is no such thing as a mild case of Down syndrome. You either have it or you don't. Some people with Down syndrome have more significant delays than others, and some have more serious health concerns. As with all people, there is a huge range in physical characteristics, health and abilities in people with Down syndrome."

A shorter version: "That is a stereotype. People with Down syndrome, like everyone else, have a range of abilities and challenges" or "Everyone has strengths and challenges. She does, too."

I also say things like: "We know much more about Down syndrome today than was known even 20 years ago. People with Ds are capable of so much more than ever thought possible. I'd never want to dictate to any of my children what someone else thinks they can't do. Only Alina can tell us how far she will go and what she will accomplish."

I will always highlight my daughter's personality, her abilities and potential, and the fact that she is a child--a person with a diagnosis--not the diagnosis itself.  

While there are some things that are unique about her because she has Down syndrome, she is just like everyone else in all the important ways.

Feel free to use any of the above information (in whole, or pieces and parts).