Wednesday, March 21, 2012

3/21 Our First Down Syndrome Awareness Day

Today we celebrate the gift that is Porter Charles. We hope you'll join us as we begin to spread awareness of the many things we've learned over the past few months.
There are parts of our story that are sad. Looking back, they didn't need to be sad days, but the negative way the news was delivered just caused them to be sad days. Like the Monday our lives changed. We had our 12 week ultrasound on a Friday. The baby looked amazing- he was sucking his thumb and swimming happily inside me.  First thing Monday morning, Genzyme left a message on our home answering machine. They only call if there is a problem. It took them six hours to return my call.  We're sorry, they said, but there is a 1 in 5 chance that your "fetus" has Down Syndrome. No longer a baby, medical professionals quickly changed their verbiage to "fetus."  I've grown to hate that word.  I saw my baby suck his thumb...he was a baby. My OBGYN scheduled us for a CVS test the next day without any genetic counseling, in order to "keep our options open," despite the fact that I told her I was opposed to terminating regardless of any testing outcome.   Luckily, we met with a very understanding doctor at Perinatology, who explained the test and additional testing/monitoring options. When we declined the CVS test because we felt the risks were too high for our baby, he supported us.  We were scheduled for genetic counseling soon thereafter.  The counselor talked about statistics. 90% of people who receive a prenatal diagnosis do choose to terminate, she told us, because having a special needs child carries so many complications.  There was a "if everyone is doing it, it must be right" spin to her speech. "Except for in Texas...they're very religious down there" she actually said.  Overall, genetic counseling left me with a sour feeling.  But over the next few weeks, I felt the need to know growing inside me, as every "I'm a big sister" that came from Penny's mouth put me in tears. So we scheduled our amnio and we waited.  Looking back, we were never presented with resources for raising a child with Down syndrome or told that there is a long waiting list for adopting children with Down syndrome. Most of the information we received from medical professionals in those days when we were labeled "high risk" was negative.   

At our amnio, we met ultrasound tech Mary. She was an asset throughout this whole process and we continued to see her for many of our remaining ultrasounds.  Mary was calm and clearly explained everything she saw. She always made us feel as though our baby was an amazing baby- something we needed to hear! I was more than a little nervous for the procedure, but she calmed my nerves. Ten days later, I got the call while at work from the genetic counselor. "I'm sorry, but it's Down syndrome".  I don't remember much else of that phone call, but I do recall just before hanging up that I remembered to ask the baby's sex. "It's a boy". I had to call and share the news with RC. And then we spent an afternoon wondering what the future would hold for this baby boy and our family.
There is an amazing part of our story when we realized we weren't alone on this journey.  The day we received our amnio results, we had to take Penny for her flu shot. She pulled a magazine off the shelf at the doctor's office and brought it over to me.  It was a magazine filled with resources for special needs children. In it, I found the contact information for the Montgomery County Down Syndrome Interest Group. I emailed the contact that evening and she immediately responded. She put us in touch with some other families who had a prenatal diagnosis and they were amazingly supportive. I also emailed the greatest advocate I've discovered and quickly received a response from Kelle Hampton herself.  Her blog, Enjoying the Small Things, has opened my eyes to a wonderful perspective on life.  I thank God for these resources every day.  And for our families- we shared the news with them that same night and we were overwhelmed by their support!
The most amazing part of our story arrived quickly on February 28th.  Porter gave me the birth that I dreamed of. And from the moment the doctor placed him on my chest, I knew without a doubt that he was mine and I was his. I was so afraid that I was going to cry when he was born. Instead, all I wanted was for him to cry- and when he finally let out those first little cries, it was the best sound my ears had ever heard.  There were a few minutes where I held my breath waiting for him to perk up, and then our episode with jaundice, but if those are the worst things that the universe throws at us, we are amazingly blessed! His heart is healthy and he is growing stronger by the day!  He is a calm little baby and his eyes have a story to tell. I can't wait to live that story with him!

I know Porter is only three weeks old, but today, we don't really see Down syndrome when we look at him.  In some pictures, he looks like the spitting image of big sister Penny. He's got ten fingers and ten toes and the most beautiful little eyes. He makes the best faces and sleeps like a dream.  He is just the baby we needed and I am so thankful and blessed to rock him to sleep!
We are incredibly thankful for the love and support we've received over the past few months. We hope that you'll continue to follow Porter's story as he grows and teaches us more about life and love than we ever knew.


  1. Porter could not have been blessed with better parents than you two! Thank you for sharing your story.

  2. Danielle - beautiful. Growing up friends of mine had an Aunt with Downs and severl of her adult friends came to the pool I was a lifeguard at. I never saw and felt such unconditional love from anyone other than my parents.

    IN college one of my best friends Mom gave birth at 39 to a son, Ryan, with Downs. He lives up in the Wilks Barre area and is the most handsome boy I know. I guess hes really a teenager now. He's been in the local papers, met all the hockey players on the AHL team there and recently got a dog thru an resource. THe dog is trained to help in social situations, etc. ITs amazing.

    Another kid I grew up with has a son who is downs, he is prob 16 months or so now. THey are involved in CHOP fundraisers and groups.

    I dont know why I am sharing all this as you know you arent alone! You are giving this world a gift of love and awe thru Porter!!