Reframing a diagnosis of Down’s syndrome, 1 gift basket at a time

The letter says “Congratulations!”

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

“Hello, my name is Carissa and I would like to be one of the first to congratulate you on your new member of your family. Congratulations! I also want you to know that I have also received some unexpected news,” begins the letter. “My husband and I welcomed our son, Jack, and we were told at birth that he was born with an extra chromosome and had Down syndrome. There were times of confusion, of confusion. grief over what we thought was our life and fear. Please. know that you are not alone in your feelings. “

A copy of the letter can be found on Carroll’s blog, Strength for the Climb. He then describes the many ways Jack has brought joy to his family’s life.

The idea for Jack’s baskets, as they are called, came around the time of Jack’s first birthday.

“I was trying to find a way to celebrate in a special way and I remembered that one of the things that really helped me in those early days was the words of encouragement from parents of children with Down’s syndrome. flourish and wouldn’t change their children for the world. “

Carroll told ABC News that the baskets, which began to be delivered to the hospital where she gave birth to Jack, will now be distributed to every birth center in the Twin Cities. Each costs the Carroll family $ 60, but since the Jack’s Baskets story has grown in recent days, they’ve received enough donations to make 130 baskets. Carroll said she plans to take 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 scary moment .

“If everyone in the room is looking at you [the parents] like the world just shattered you are going to feel that too, “said Jacob, who has had a prenatal diagnosis with his son, Owen.” They might not have anyone to celebrate this baby with them. “

DSDN documents are part of the information included in the shopping cart that families receive. The group will be spending time putting the baskets together at their very first Moms Retreat in Minneapolis next September.

“It was such a great surprise to receive this wonderful gift from a family who are raising a son with Down’s syndrome and who were able to share their story with us,” said Heather Ellis, who received one of Jack’s baskets for her new baby. -born, Dylan, earlier this week, and knew before Dylan was born that he had the genetic disorder. “Having no close friends or family with children with Down’s syndrome, we didn’t know what to expect or who to talk to. “

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

“I haven’t met a family that hasn’t been positively affected by their loved one with Down’s syndrome,” Carroll told ABC News.

“But nine out of ten people have a terrible experience in the hospital,” she added. “We need to bridge the gap between healthcare professionals and families. “

Dr. Brian Skotko, co-director of the Massachusetts General Hospital Down Syndrome program, has conducted research into diagnosing Down syndrome to parents, both prenatal and postnatal.

“We have learned time and time again from parents that there are best practices on how to get the news out,” he said.

Skotko said that many Down syndrome organizations now have a “first call program” for new parents and expectant parents, such as that of the Massachusetts Down Syndrome Congress.

“More importantly,” said Skotko, “clinicians should suggest connecting new and expecting parents with veteran parents who already have children with Down’s syndrome. Only they can describe what it’s really like to have. a son or daughter with Down’s syndrome. “

This is exactly the motivation behind Jack’s Baskets.

“Jack made me see life in a much nicer way,” Carroll said. “And that each person is someone’s child and deserves to be respected and loved.”

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