Wednesday, June 26, 2013

When & How to tell people that your child has Down syndrome

I see this question very often on the Down Syndrome Pregnancy support group.  I even asked it myself once up a time ago.

Here was what we did, including the letter I sent to family.  Of course, this may not be great advice for everyone, it's simply what worked for us.

First, we waited until we were truly okay with our son's Down syndrome.  A great piece of advice that we received and that I agree with...friends and family take their cue from YOU.  If you're cool with it, they usually are too.  If you're upset and tearing up, they're going to be sorry for you.  If you're excited about your new baby, they will also be excited.  We didn't tell anyone at all during the testing phase (which took a month altogether).  Then, once we had our diagnosis, it was a couple more weeks before I felt comfortable enough to tell my mom.  From there, we branched out a few people at a time.

I wrote a letter about our son's diagnosis and sent it first to a couple of trusted friends.  I told them I was practicing, that I needed to be more comfortable and "try the letter on for size" before I sent it out to all of our family.  After a few changes, I sent it to my immediate family, just my parents and my brothers.  I'd already told my mom over the phone but I sent her the email, too.  My family all lives 2000+ miles away so telling them in person wasn't an option.  I chose email for most of them since it would give them a chance to process the news on their own, plus I could include some links if they wanted to know more.  I've included the letter at the bottom of this post since it's kind of long.

A couple of weeks after that, I shortened the letter significantly and sent it to my extended family.  And then...Facebook.  Shannon and I talked about whether to make it public or not.  We decided that we didn't want any weird moments, that we'd rather have everyone on earth know about our son's diagnosis.  That way, they could just enjoy his cuteness once he arrived and not have to wonder "Does he have...?"

I wrote a Note for Facebook, taken from parts of the family letter.  Then I went through my Facebook friends and I trimmed it.  I keep my friends list short anyway, but I cut about 20 people entirely.  Another 30 or so I bumped down to Acquaintance so they'd only see certain posts.  Then, when Shannon and I were both ready, we posted our Note to only our Friends.  Response was immediate and very, very positive.  No one said they were sorry, no one asked if we would terminate.  Most people just said they couldn't wait to meet him.

After that, we readily told friends and colleagues as we saw them.  We were upfront about it because, again, we didn't want any weird vibes later on.  Not everyone chooses to handle it this way, but it has worked perfectly for us.  At this time, our son is almost 3 months old.  We were surrounded by so much love when Cade was born.  Even now, people stop me at church and let me know that they love seeing his pictures on Facebook, or they comment on how much he's growing.  No awkward silences, no staring, no whispers.  Just adoration for our seriously cute little boy!

Family letter:
Dear family,

This is a long letter and I hope you’ll sit down and eventually read all of it. 
First things first…we found out on Monday, Dec 3, that our new baby has Down syndrome. We’re doing okay.

Whew, got that over with! Right now you’re rereading that and thinking, “Wait, what? How did that happen? What’s going on? Is this email for me?” 

Now I’ll start over and at the beginning. 

For a healthy 36 year old woman, the chances of having a baby with Down syndrome are about 1:400. 

Early Nov - At 18 weeks, I took a routine blood test called a Quad Marker. Gave the blood and never gave it another thought. The test has been a non-event for our other pregnancies. 

Monday, Nov 12, my doctor called. The Quad test looks specifically at 4 hormones in the blood. If any of them are outside the normal range, this is a “marker” for Down Syndrome and other chromosomal abnormalities. All of my hormones were outside the normal range. Our chances of having a baby with Down syndrome were now a shocking 1:28.

Friday, Nov 16, we went for a Level II ultrasound at a high risk specialist. We met with a genetic counselor, a high risk OB, and then had the ultrasound. We found out that we’re having a BOY! And they found more markers…there’s a fold on the back of the neck that should be a certain width. Anything under 5 is normal. Our baby’s was 6.1. Not astronomically high, but definitely a marker for Down syndrome. Also, they found fluid in his kidneys, another marker. Both of these markers are harmless for the baby, but they’re not often seen in chromosomally-typical babies. Our chances of Down syndrome were suddenly 1:3. 

Next we had a diagnostic (Note: this is no longer considered diagnostic, but rather a good screening) blood test. It’s called MaterniT21 and tests specifically for Trisomy 21, or Down syndrome. Down syndrome occurs when there are 3 copies of the 21st chromosome instead of the normal 2. Anyway, I had the blood drawn on Monday, Nov 19. Then we had a very long wait over the holiday and through the next week. Finally, Monday, Dec 3, we got the call. Our son’s test was positive for T21. 

We met again with the genetic counselor, who explained how the blood test works and how the diagnosis is made. Camille and Colby probably don’t have to worry about passing T21 on to their own children. 99% of the time, T21 is a fluke, an accident. We will do a chromosomal test after the birth to see for sure (it depends on how the chromosomes are laid out). 

So what’s next? At our ultrasound, everything looked perfectly healthy with our little guy, except for the heart which we couldn’t see due to his position. Babies with T21 very often have heart defects, some harmless and some requiring surgery after birth. Next Thursday, we go back to the specialist for an echocardiogram. It will have been 4 weeks since the last ultrasound and he should have grown enough to get a good look at the structure of his heart. This will determine our next steps. If his heart is perfect, then the pregnancy will proceed with little change from my others. I’ll have a couple more ultrasounds later on, but I’ll stay with my regular OB and deliver at our regular hospital. If, however, he has a large defect, then we will deliver in Portland and he will go to the NICU at the children’s hospital. Anything in the middle will be watched very closely so we know how to proceed.

Shannon and I have had 3 weeks to process the possibilities. We’re really feeling pretty okay about things right now. Our faith in God is sustaining us and we’re leaning heavily on Him. God created this child and He will give us the tools to parent him. We haven’t told Camille and probably won’t until after Christmas. We have up days and down days, but now that we have an official diagnosis…well, I slept well for the first time in weeks. Waiting was miserable.
We know that you must have many questions, and we will try our best to answer, but we have a lot to learn in the next few months about Down syndrome. We have already started to research, and you can look at for some basic information for friends and family. They’ve published a small book specifically for friends and family. I’m sending copies to Mom and Dad, but if you want one, just let me know and I’ll send one to you. Some of the most important things we have learned are that each person with Down syndrome is a unique individual, and that recent advances in medicine, education, and acceptance have greatly improved the lives of people with Down syndrome. More importantly, we have learned that our son will live a rich and rewarding life, and will enrich ours as well.
We know you may not know what to say to us — and we understand. We’re not sure we would have known what to say either. We would appreciate if you could avoid saying, “I’m sorry.” We have heard from other parents that they hear this a lot, and it tends to hurt after awhile. We have listed a few websites below which might help.
We will keep you updated about any issues that come up and when the little guy arrives. Thank you all so much for your love for us and for welcoming our little one.
Heather & Shannon
Websites: (includes the booklet “Your Loved One is Having a Baby with Down Syndrome”)
NDSS (National Down Syndrome Society)
NDSC (National Down Syndrome Congress)
Down Syndrome Online (by DownsEd)
DSRTF (Down Syndrome Research and Treatment Foundation)
Stone Soup “What to say”  (A helpful blog post)
Diagnosis Down Syndrome “What to say” (with faith-based citations)

June 2013 ~  Colby, 3 years  ~ Cade, 3 months


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