I had the unique opportunity to go back to the hospital where I delivered Jack (and Luke). I got a chance to give a family's perspective on what it's like to get a diagnosis of Down syndrome at birth. This came about during a conversation I was having with a contact in the maternity ward. Thank you friend, for listening and answering my countless questions. You are helping change families' stories and I am grateful for the work you put in to make this happen.
As I drove to the hospital I could feel the butterflies in my stomach. I even rehearsed what I was going to say and then the tears came. They streamed down my face as I recalled how the delivery went. How I still imagine Chris sitting in the room (alone) as the nurse practitioner came in and handed Jack to Chris and said, "Are you aware of Trisomy 21?" Then proceeded to share her suspicions and before departing the room, "Well, just enjoy your baby."
The tears do not come because Jack has Down syndrome. The tears come because of how the diagnosis was delivered and how the story of our lives with Jack starts. Over the past 17 months, I have met many, many, many families that also have been told the unexpected news in such a heartbreaking way.
I shared our experience to a room filled with nurses. Introducing myself and our family, showing pictures of the precious moments we have had. I acknowledged that I know they are not the ones that deliver the diagnosis, but they have a huge impact on the first interactions that families have after they hear the unexpected news. Including our own birth story, I shared examples of how the diagnosis was delivered to give them background of what families are experiencing. Here is one of the birth stories I shared...
"After the final push and my daughter entered the world, she was carried to the warmer and the nurse practitioner yelled, "This baby has Down syndrome, get her to the NICU immediately."
That is how she found out the news. She later explained to me that they were treated like they had the plague for the remainder of their stay in the hospital.
Unfortunately, this is all too common among families and we find we bond over the experience. Can you imagine this being your birth story? What emotional state would you be in? How much of this experience affects the ability to accept their child and this new journey?
I continued sharing that even though the diagnosis was delivered to us in such a traumatic way, we had a few significant people that came in shortly after Jack's birth and helped us take our first few steps on this new path. Because of these nurses, the love and prayers from our family and friends, along with the deep longing to change families' experiences, I accepted the opportunity to share our story at a staff meeting at the hospital.
A nurse came in and said, "Look at your beautiful baby!" That moment CHANGED MY LIFE. Her comment helped me believe, that yes, he is a beautiful baby. She helped me remember what I prayed for each day of my pregnancy, a fearfully and wonderfully made child. Jack, you are an answer to prayer, my beautiful baby. I will never forget that day when she came in and doted over our son.
Another nurse came in and pulled up a chair and stayed after her shift was over. She loved on Jack and treated us like any other family. This helped me realize that people (other than our family and friends) would accept our child. She helped us celebrate his birth. That he is precious. She came in with this adorable hat and said she specifically grabbed it for Jack.
I told them that I understood that the reaction to the diagnosis can vary from family to family. That many times the room will be filled with tears, silence, and worry about the future. I mentioned that I have met a wide spectrum of families and their responses have included ideas of considering putting their child up for adoption, to families that took only a few days to adjust to the news. I assured them that I have NEVER met a family that wished they would have never had their child. Our children are cherished, loved, and adored like every child born. That our kids bring so much joy to our lives and help us see life in a much more beautiful way.
I showed them this picture that was taken by my dear friend after Jack's birth...
Each family comes to a point, whether weeks or months, where they gaze upon their child in amazement of who they are and wouldn't change their child if they could.
I asked them if they would consider creating the environment that made families reflect on their time in the hospital and say, "Wow, they knew something before we did. That our child would change our lives for the better." I asked them to go outside their comfort level and love on these families who may be fragile, in shock, fearful, and filled with tears. Help them see what they will soon come to see when they fall in love with their child. When their baby steals their heart, smiles, coos, and they come to realize they have been given one of life's best gifts. I promise you, the family will never forget your response. You have the influence of starting this beautiful journey with a positive message, their child is to be celebrated like any other child.
I encouraged them that if they didn't feel comfortable with what to say to the parents, go over to the baby and say something to the baby. "You are precious."
Tell them our story.
Tell them to connect with other parents...not therapists, teachers, or doctors...talk to actual parents as they know what it's really like to have a child with Down syndrome.
Let's do this better.
I know we can do this better. When I say "we" I shared that I feel it's important for us families to follow up with the hospitals. To let them know that if we had a chance to change our child, we wouldn't. How can we blame the hospital staff if the only experience they have with us are when we are crying and filled with sadness? They don't get a chance to see when we can't stop giving our sweet child kisses, cuddling them to sleep, living our lives, being their biggest fan, and beaming with pride at their accomplishments.
At the end of my time, I asked if any of the nurses had questions. One of the NICU nurses asked for my advice on a situation that she has encountered. This reminds me that our work is far from done...
"What if a child comes into the NICU for a short period of time and the doctor doing rounds knows that the child has Down syndrome and doesn't diagnosis the baby when we all know it's evident?" She explained that the doctor told her that the family can go to the first or second appointment (1 or 2 weeks later) and get the diagnosis then.
I was speechless. I even had to have her tell me the scenario again. Are you kidding me? A doctor has suspicions and doesn't say anything to the family? What if there were other health issues that need attention? What if the parents opted out of an ultrasound during pregnancy and there is a heart condition and you just sent the baby home? I couldn't believe it. This doctor didn't want to have a difficult conversation. Sounds like he was just punching his time card, only to dismiss that these families are people. Or even worse, looking at this baby like a medical text book.
Let's just say I didn't even make it out of the parking lot before calling Jack's pediatrician so he could help me understand how this could happen. How can we reach the doctors? How can we spread the word about how amazing our children are, how to properly deliver a diagnosis, and how we can bridge the gap between the medical community and families loving their lives raising children with Down syndrome.
I read them the letter I wrote and put in Jack's basket and shared my desire for each child to be celebrated and family to be congratulated. I revealed to them that I had heard from a family that received one of the baskets and that they said the basket meant the world to them. The family also expressed that it was the only congratulations they received while they were in this hospital. It was so heartbreaking to hear this and so motivating to me to get more of Jack's baskets and stories in the hospitals. I am excited about the upcoming meeting with Gigi's medical outreach committee and Down Syndrome Diagnosis Network later this month.
Overall this experience was so amazing and provided healing to our experience. It will change families' stories. The nurses were so receptive to the message and I believe they all desire to do better.
Our work is far from over...and I can't wait to continue to speak up about changing families' stories.
Jack, you are changing the world and I couldn't be more proud to be your mama. Let's do this better.