Reframing a Down Syndrome Diagnosis, 1 Gift Basket at a Time

PHOTO: Carissa and Chris Carroll and their sons Jack and Luke. Jana Wick
Carissa and Chris Carroll and their sons Jack and Luke.

The letter in the basket is a far cry from what many parents hear when they find out their newborn baby has Down syndrome.

The letter says "Congratulations!"

That one word might mean so much in a sometimes-scary, very-often-unexpected time for a new parent. So Carissa Carroll, a Shoreview, Minnesota, mom of two -- including 1-year-old Jack, who was born with Down syndrome -- decided she would be the one to say it in the form of a letter inside a basket filled with gifts and information for the baby and parents.

"Hello, my name is Carissa and I would love to be one of the first people to congratulate you on your newest addition to your family. Congratulations! I also want you to know I have also experienced receiving unexpected news," the letter starts. "My husband and I welcomed our son, Jack, and were told at birth that he was born with an extra chromosome and has Down syndrome. There were moments of confusion, grief of what we thought our lives would be like, and fear. Please know that you are not alone in your feelings."

A copy of the letter lives on Carroll's blog, Strength for the Climb. It goes on to describe the many ways Jack has brought joy to his family's lives.

The idea for Jack's Baskets, as they're known, came around the time of Jack's first birthday.

"I was trying to come up with a way to celebrate in a special way and remembered that one of the things that helped me so much in those early days were the words of encouragement from parents of kids with Down syndrome that are thriving and wouldn't change their children for the world."

Carroll told ABC News the baskets, which started out being delivered at the hospital where she delivered Jack, will now be given to every birthing center in the Twin Cities. Each one costs the Carroll family $60 to make but, since the story of Jack's Baskets has gained momentum in the last few days, they've received donations enough to make 130 baskets. Carroll said she's thinking about taking Jack's Baskets nationwide.

Jennifer Jacob, founder and vice president of the Down Syndrome Diagnosis Network (DSDN) and author of the book, "Unexpected," said the baskets -- and the message they bring to parents -- are crucial in what is often a frightening moment.

"If everyone in the room is looking at you [the parents] as if the world just shattered, you're going to feel that way, too," said Jacob, who had a pre-natal diagnosis with her son, Owen. "They might not have anyone celebrating that baby with them."

DSDN materials are among the information included in the basket families receive. The group will spend time assembling the baskets at their first-ever moms retreat in Minneapolis next September.

"It was such a nice surprise to be given this wonderful gift from a family who is raising a son with Down syndrome and could share their story with us," said Heather Ellis, who received one of Jack's Baskets for her newborn son, Dylan, earlier this week, and did know before Dylan's birth that he had the genetic condition. "With not having any close friends or family members that have kids with Down syndrome, we didn't know what to expect or who we could talk to."

Carissa, she said, included not only resources for the family but some of Jack's favorite toys.

"I've not met a family that has not been positively affected by their loved one with Down syndrome," Carroll told ABC News.

"But nine out of 10 people have a terrible experience in the hospital," she added. "We need to bridge the gap between medical professionals and families."

Dr. Brian Skotko, co-director of the Massachusetts General Hospital Down Syndrome Program, has conducted research on the delivery of a Down syndrome diagnosis to parents, both pre- and post-natal.

"We have learned from parents over and over again that there are best practices on how to deliver the news," he said.

Skotko said many Down syndrome organizations now have a "First Call Program" for new and expectant parents, such as the one at the Massachusetts Down Syndrome Congress.

"Most importantly," said Skotko, "clinicians should offer to connect new and expectant parents with veteran parents who already have children with Down syndrome. Only they can describe what it's really like to have a son or daughter with Down syndrome."

Which is exactly the motivation behind Jack's Baskets.

"Jack's made me see life in a much more beautiful way," Carroll said. "And that every person is someone's child and deserves to be respected and loved."