WATCH: How health care providers should tell parents about a Down syndrome diagnosis

“We’d like for [healthcare providers] to tell parents, “I have some unexpected news,’ rather than ‘I have some bad news.’” say Chris and Carissa Carroll, Minnesota parents of three, whose second child has Down syndrome. Jack’s diagnosis after his birth in 2013 took the Carrolls by surprise following four normal ultrasounds during Carissa’s pregnancy.

The cold, abrupt, negative way the news was delivered by the healthcare team only compounded the Carrolls’ distress as they suddenly faced a future full of unknowns for themselves and their baby. 

Now, Jack is 9, and the nonprofit the Carrolls founded, Jack’s Basket, has delivered over 6,000 welcome baskets since 2014 to families who receive a diagnosis of Down syndrome either prenatally or at birth, all as part of their mission of ensuring that every child with Down syndrome is celebrated and every family congratulated. Besides the baskets, the second prong of the Jack’s Basket approach is educating medical providers on how to have clear, compassionate conversations with families about a Down syndrome diagnosis. 

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Jack’s Basket released “Prenatal Consult,” a 17-minute video intended as a resource for healthcare providers who have recently shared or are preparing to share a Down syndrome diagnosis with a family. When healthcare providers see the lived reality of families who have a child with Down syndrome, they’re equipped to share new diagnoses with gentleness, hope, and genuine excitement. And when the families they counsel hear the beauty of their children’s lives, they can take a deep breath and relax, open to the possibilities that lie ahead. 

Down syndrome Diagnosis – Prenatal Consult Film from Jack’s Basket on Vimeo.

Prenatal Consult features three healthcare providers — a neonatologist, a pediatric critical care doctor, and a pediatric nurse practitioner — as well as four families of children with Down syndrome. The healthcare providers each speak about their role in caring for children with Down syndrome, as well as their favorite part about caring for these tiny patients. They also offer words of encouragement to families of children with Down syndrome. 

Each of the families walks viewers through receiving a diagnosis and spoke into the fears and questions they felt when they learned the news. Pictures and home videos poignantly punctuate each mom’s testimony. One mom describes reaching out to a friend who had a three-year-old with Down syndrome immediately after receiving her child’s diagnosis. Another mother shares candidly about the complex medical needs her daughter had immediately after birth. That same woman says, “Enjoy being a parent rather than worrying about the diagnosis. Time will always tell you how beautiful it is to have a child with Down syndrome.” 

A third mom shares her story entirely in Spanish with translation on the screen. She admits, “When I received Jocelyn’s diagnosis, I felt very sad, because I hadn’t gotten a chance to know her and she was my first baby.” Now, she can’t imagine the world without her daughter’s vibrancy, saying, “the house is always joyful when she’s home.” 

The fourth mom describes her daughter Evelyn as her “sweet, spicy little 12-year-old… she has the biggest personality, she’s full of spark and fun and tenderness, and she’s the joy of our life.” Evelyn’s early life was far from uneventful, including surgeries on her heart, intestines, esophagus, and neck. Those early challenges taught Evelyn’s parents all about “resilience,” “priorities,” “taking nothing for granted and rejoicing in every little thing that comes your way.” 

At the end of the video, Carissa Carroll speaks words of confident, calm hope for parents who have just received startling news. “I, alongside other parents, can confidently tell you that your baby will change your life for the better, no matter what the path looks like ahead.” She concludes, “As you begin your journey, we just want to say, Congratulations!” Each of the people previously shown in the film echoes her words with ear-to-ear smiles, “Congratulations. Congratulations. Congratulations.”