We are so thankful to bring you this incredible diagnosis story shared with us by one of our amazing mothers, Dana Carlisle. We hope this gives new parents that support and encouragement, as well as a reminder of what GiGi’s Playhouse means to so many. This is just one of the many stories shared by our parents…
As new expectant parents entering a routine ultrasound late on a Friday morning – June 3, 2016, to be exact – we had no idea how much our lives were about to change. We were excited, nervous and juggling our busy work schedules just to make it in the door in time. I was just beginning to have a noticeable baby bump, and I was oh-so-proud for the world to know I was going to be a mother. When it was finally time to begin, we let the ultrasound tech know we did not want to know our baby’s gender, and we got started. Looking back, the first ultrasound tech seemed to get a bit unsure the more she continued. It didn’t alarm us. She eventually brought in a more senior ultrasound tech, who seemed to take quite a long time and go over certain areas again and again. We made it clear to her also that we didn’t want to know the gender of our sweet baby, and I added, “We just want to know that the baby is healthy,” which was met by silence.
She continued busily performing the ultrasound, which again, seemed to be taking a very long time. She then began asking us what seemed like some strange questions like, “Did you have any screenings done at 12 weeks for things like Down syndrome?” No, of course not, we wanted our baby no matter what, and what were the chances after all? She left the room, and we could hear a cluster of medical professionals whispering about us in the hallway. Naively, I wasn’t connecting the dots. My husband, however, said to me, “Why do they keeping asking us about Down syndrome?” I had barely noticed, really, but after he said it, I realized this had come up a couple of times since we had begun our ultrasound.
Soon, a doctor entered our room and said, “I’m sorry, we have a few things we need to talk about.” She began to tell us about our baby’s heart condition, unusually large brain ventricles, short arms and legs and lack of a nasal bone, all of which were markers for Down syndrome. I felt my face become white, as it seemed like the list of things we needed to talk about was never going to end. She must have given us a few moments alone because I remember my husband and I looking at each other and saying, “I’m sorry,” followed by, “I’m sorry, too.” Sorry for what, we weren’t sure, but just sorry things weren’t going to be the way that we thought.
The doctor then met us in a genetic counselor’s office where we looked at pages of chromosome arrangements, charts showing us the “odds” of having a baby with Down syndrome at my age, words like “quality of life” were discussed, followed by technical explanations of different testing we could do as well as our “options.” This couldn’t possibly be happening. The next days and weeks were followed by difficult conversations between the two of us and with family and close friends, the beginning of many, many doctors’ appointments and so much wresting in my heart.
We talked to a cardiologist on the phone the day of our ultrasound, who told us there was a 50% chance our baby’s heart condition was related to Down syndrome. Okay, there’s a 50% chance our baby DOESN’T have it, I told myself. We chose not to have an amniocentesis done that would have told us with 100% accuracy whether or not our baby had it, and instead, opted for a blood test, which told us with 99% accuracy that our baby would in fact have it. When the genetic counselor called with the results, the pity I heard in her voice told me everything I needed to know before she even delivered the news. But in my stubbornness, I held onto the 1% chance that the results were wrong, yet in my heart I knew the truth.
Unsure of how to carry on at work, I sent an email explaining to a wonderful team of co-workers what was going on in my life all of a sudden. One of my co-workers, another Lakewood resident just like we were, soon after sent me an email asking if I was aware of GiGi’s Playhouse. It hadn’t been open terribly long at this point, but I had seen it driving down Detroit. In my travels, however, I had never paused long enough to read the words ‘Down Syndrome Achievement Center’ under the sign and honestly thought it was probably a daycare. I quickly turned to Google and saw this amazing facility, but was sure we didn’t belong here.
As I told my mom about this facility, she immediately learned everything she could about it, emailing back and forth with Lizz for days and even months. It all sounded wonderful, but surely, we didn’t belong there. Soon my mom had arranged a visit for us to meet Lizz in person and tour GiGi’s. Entering the doors was one of the hardest things I had done up until that point because it meant we really did belong here. On this day, we received a gift and welcome package from GiGi’s staff and Board, along with a card telling us ‘Congratulations!’ It left such an impression on us that my husband took a picture of it and sent it to his parents in Texas. These people understood where we were, they had walked this road before and they were celebrating our baby!
Of all the things we were told on June 3, 2016, never did we hear ‘Congratulations!’ Never did we hear, “You are going to have so much FUN as a family!” or “There are so many amazing resources available to you and your family” or “We are so excited to meet your baby.” All of these things and more we quickly heard from the GiGi’s community. Soon, we realized this was a place we DID belong and we WANTED to belong. Fears turned into possibilities, questions turned into answers and heartache turned into joy.
GiGi’s quickly embraced our family, from the staff and Board to volunteers and other families. All of a sudden, we had this HUGE new network of friends, support, resources and excitement for the journey ahead. It’s hard to put into words what GiGi’s has truly meant to us over the last two years. Believe it or not, this amazing resource is about a 15-minute WALK from our house! Its doors opened the month before we became pregnant! We have now celebrated birthdays and milestones with other GiGi’s families and realized just how much we love Down syndrome!
We can never say ‘THANK YOU’ enough to the parents and loved ones of individuals with Down syndrome in the Cleveland area who went before us and paved the way for this amazing community. You have given our family a new, huge family full of beautiful, loving people we never would have met otherwise!