Twin Cities program helps parents celebrate their babies with Down syndrome

In March 2013, while Carissa Carroll was in a hospital room recovering from an emergency Caesarean section, her husband, Chris, sat in the waiting room until he was allowed to go in. A nurse practitioner approached Chris and asked whether he was aware of a condition called trisomy 21.

Trisomy 21 is another name for Down syndrome. The Carrolls' newborn was showing physical signs of having it, the nurse practitioner told Chris.

"Well, just enjoy your baby," she added, and walked away.

The Carrolls were left with the "shock, confusion and fear" of absorbing that unexpected news, lacking advice on what to do about it, and stunned by the "abrupt and insensitive" way it was delivered.

"What I would have liked to have heard is, 'Congratulations on your baby boy. We have some news that may be unexpected,'" said Carissa Carroll, 43.

The couple adjusted and now celebrate what their son Jack contributes to the family. "It has been a beautiful journey of growth, loving and learning from him," Carissa Carroll said.

People tell the couple Jack is lucky to have them as parents, but she sees things the other way around.

"Honestly, we have been so blessed by what he has taught us about life," she said.

The Carrolls sympathized with other parents receiving that same news in a blunt or even negative way. So when Jack turned 1 year old, they took action. They heard about a family in a local hospital who'd just had a baby with Down syndrome. They visited the family, bringing a basket of gifts and resources for supporting children with Down syndrome.

"I wanted to make sure that they knew that their baby was worthy of celebration," Carroll said. "Although it's shocking and unexpected, life is good, parents need to know there's a loving and supporting community out there."

The Carrolls kept it up, getting names of new families and presenting them with gift baskets, attending medical conferences to connect with doctors. They became a nonprofit with many volunteers. In the past decade, Jack's Basket, headquartered in Arden Hills, has acquired a staff of six and delivered baskets to families with new Down syndrome babies in all 50 states and 46 countries.

"What started as an idea has evolved into a movement that is changing the way the world welcomes babies with Down syndrome," Carissa Carroll said.

'Unexpected news'

Jack's Basket celebrated the organization's 10th birthday (and the real Jack's 11th birthday) on March 3 with a gathering of volunteers and families who received baskets. Meanwhile, the nonprofit has presented a new curriculum for health care providers called Communicating Unexpected News.

The program teaches how to sensitively deliver news of a baby with Down syndrome (or other unexpected, but not necessarily negative news) "and being able to discuss that piece with all the joy and happiness that a child can bring to a family," said Dr. Erin Plummer, a neonatologist at Children's Minnesota in St. Paul who developed the curriculum.

About one in 700 babies is born with Down syndrome, or about 6,000 a year in the United States. The condition comes with mild to moderate intellectual ability, and children with Down syndrome are slower than other children to meet developmental milestones, such as walking and talking. About half of children born with the condition have congenital heart defects. It also can cause hearing and vision issues and other health problems.

Doctors receive little training in medical school on how to deliver such news, Plummer said. Before she learned about Jack's Basket, "even though I was trying to do my very best and I thought I was doing a good job in delivering a diagnosis, I was not," she said. "I just didn't know what I didn't know."

She heard about Jack's Basket, though, and in 2019 attended the organization's annual gala. "I just fell in love with the mission," Plummer said. Afterward, she contacted the organization to ask how she could become more involved.

The curriculum's objective is to teach health care providers how to be supportive of new parents feeling "a wave of raw emotions," she said. Much of what parents feel is fear of the unknown, but a health care provider can help prepare them by offering resources available to families.

"The one consistent thing that we tend to hear from parents is that they do not want to change their child's diagnosis but they would change the way it was given," Plummer said.

Shifting the narrative

"We're now of the mindset that everyone should have a child with Down syndrome," Lisa Nevin said.

In 2018, 10 weeks into her pregnancy, a genetic counselor called and said she was "sorry to share" the news that a test had showed a 93% chance her baby would have Down syndrome. Abortion or adoption were options, the counselor said. Nevin wasn't interested in either.

"The conversation left me feeling a little tarnished," Nevin said. "I felt like I had been judged and a value had been placed on my unborn baby."

Once Grace was born, Nevin's outlook changed. "I look at her and I don't see a diagnosis," she said. "I see a child that's just ready to learn and love."

Nevin, who lives in California's Marin County, received a basket from Jack's Basket and volunteered with the organization. Last year, she left a 15-year career in human resources to become its director of programs and development.

At one point, Nevin contacted the genetic counselor who'd called. She told the counselor about Jack's Basket.

"She responded right away and was very open to it," Nevin said. "She wrote in the email back to me that she wanted to apologize to me that when she delivered our diagnosis she was new in her role."

Grace "has been the best gift for our family," Nevin said. She "teaches us to appreciate the simplest wonders of the world. She shows us that love is a language, she makes us laugh."

When Jonathan and Allison Alexander of St. Paul learned during her pregnancy that their baby had a 73% chance of having Down syndrome, their "world just kind of froze," Allison said. "We were pretty shook." But when Ella was born, a nurse told them about Jack's Basket.

"It was incredibly timely because we were in such a vulnerable moment," she said. "We were happy to learn there were people to support us."

By then, though, their worries were already slipping away.

"Here we just had this normal baby who just happened to have Down syndrome, and it was almost like it was meant to be," Allison said. "These kids are capable of a lot if we shift the narrative. I feel very lucky to be her mom and be a part of her life, and I wouldn't change anything about who Ella is."