At first, my son’s abrupt Down syndrome diagnosis was a shock. Then it became a calling to start a nonprofit that celebrates babies with Down syndrome.

by Carissa Caroll, M.Ed.

In March 2013, I sat in a hospital bed, just having given birth to my second son, Jack, by emergency cesarean-section. Little did I know that the unexpected delivery would pale in comparison to the news that would come shortly after, changing our lives forever.

While my husband waited alone during my recovery, a nurse abruptly asked, “Are you aware of Trisomy 21? Your baby is showing signs of Down syndrome.” She continued with, “Well, just enjoy your baby,” and left the room.

Not knowing how this would impact our future, my husband was left with our newborn and the responsibility to share the news with me. Holding emotions of confusion, shock, and fear, our journey began.

Navigating those first months, grief and tears came because I was holding onto the raw feelings that having a child with Down syndrome was not part of my plan. Slowly surrendering my plans, my eyes opened to a whole new perspective allowing me to truly accept Jack for who he is and embrace every part of him and this journey. This produced a love and life I wish everyone could know.

Around Jack’s first birthday, I met a first-time mom who found herself on the same unexpected journey with her baby. She reflected on the traumatic delivery of her daughter’s diagnosis (seconds after the baby was born, a nurse shouted “This baby has Down syndrome, get her to the NICU immediately!”) and the treatment her family received during their three-week hospital stay. My heart grieved with hers as she recalled those moments.

I couldn’t stop thinking about her experience. I believed the diagnosis delivery and her hospital stay directly impacted her ability to accept her new life with her daughter. Yet, her story was like so many I had heard in that first year of Jack’s life and it was igniting a fire in my heart to change these stories for the families who would receive a Down syndrome diagnosis in the future. Every child deserves to be celebrated, every family should hear a “congratulations” instead of a “I’m sorry”, or “I have bad news”.

So, on Jack’s first birthday, we went back to the same hospital where Jack was born with two baskets to give to families welcoming a baby with Down syndrome. The baskets had newborn gifts welcoming a baby worthy of celebration. They also had local and national resources, plus a letter from our family to theirs, expressing what Jack’s life had taught us in that first year. A community ready with open arms to share that life is filled with unexpected joy and their child would change them for the better.

I never could have imagined that delivering those first baskets would impact the world the way it has. Since 2014, Jack’s Basket has celebrated over 7,500 babies in all 50 states and over 40 countries by providing families with gifts, support, and up-to-date resources, and training providers to deliver diagnoses in an unbiased way.

I am thankful for Jack who changed my heart in the very best ways. Because of Jack, I'm more patient and accepting. Because of him, I choose to go outside of what’s comfortable and easy to advocate and speak life into our world. Jack has encouraged me to look at each person and see their purpose and ability to make the world a better place. My heart wishes that the world would do the same for him.

I wouldn’t change him for the world, but I will change the world because of him.

More about Jack’s Basket

Jack’s Basket exists to eliminate bias and celebrate babies with Down syndrome by equipping providers with tools to deliver the diagnosis accurately without bias, connecting new parents to resources through our basket delivery program, and sharing powerful stories to change the narrative around Down syndrome. Learn more at www.jacksbasket.org.

Here’s how you can get involved

Help change a family’s story from the very beginning. Become a Down syndrome champion.

Do you know a new baby recently diagnosed with Down syndrome? Request a basket for them by visiting www.jacksbasket.org/basket-request
Bring Jack’s Basket to your hospital, practice, or institution! Carissa and members of the Jack’s Basket medical team connect with physicians, genetic counselors, and other healthcare providers who care for families at time of diagnosis. We have presented to thousands of providers across the United States, including Grand Rounds at major hospitals. Request an informational packet to learn more by visiting https://jacksbasket.org/be-a-champion.
Connect with our resources: We’ve published a variety of provider-to-provider medical resources and tools to support you in delivering a diagnosis. Read When Bad News Isn’t Bad, Recognizing Provider Bias When Sharing Unexpected News (Pediatrics, July 2018) and share our new Prenatal Consult Video with your patients upon delivery of the diagnosis.

*Carrissa and Jack. Photo courtesy of Carrisa Carroll*

Carissa Carroll is the founder and executive director of Jack’s Basket. She taught at elementary and collegiate levels before her son Jack’s diagnosis led to her starting Jack's Basket. Carissa presents to medical professionals about how to deliver the diagnosis without bias, works with the Jack's Basket board to further the mission, and connects with volunteers who deliver baskets. When not pursuing her passion, Carissa can be found enjoying an early morning long run, quality time with her husband, and soaking up the days with her two sons and daughter.

Jack’s Basket: How my son’s diagnosis gave me purpose

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