Down syndrome is the most common chromosomal condition diagnosed in the United States, but since the start of widespread prenatal testing, the nation has experienced a 33% decrease in the number of babies born with the condition.1 Oftentimes women feel overwhelmed and afraid when they discover that the child they are carrying has Down syndrome, and many make the tragic decision to abort.
Jack’s Basket is a nonprofit organization that not only wants babies with Down syndrome to be born. It wants them to be celebrated.
In March 2013, Carissa Carroll gave birth to her second child—a baby boy named Jack. She had had a normal pregnancy, and since her four ultrasounds showed no abnormalities, she chose not to go through any prenatal testing. During labor, Jack’s heart rate dropped suddenly, and Carissa’s doctor decided to do an emergency C-section. Her husband, Chris, was not permitted in the operating room.
While Carissa was still recovering, the nurse practitioner introduced Chris to his son. “Are you aware of Trisomy 21?” she asked. Chris shook his head, confused. “Were you aware that he could have Down syndrome? We think he does, but we’re still running tests.” Without giving Chris any additional information, she left the room.
When the nurses finally brought Carissa back to her room, Chris was holding Jack. “They think he has Down syndrome,” he told her. Carissa’s eyes filled with tears as she wondered what the future would hold for her family.
“I was in shock,” Carissa said. “I’m such a planner and having a child with special needs was not part of my plan. I had a two-year-old at home already. How would this impact him? How would this change our family?”
Because Carissa and Chris weren’t given much information, they made a lot of assumptions at first about how Jack’s extra chromosome would impact his life—and theirs. The abrupt way in which they were told about his diagnosis contributed to their fear. “When you have a baby with Down syndrome, people don’t say ‘congratulations,’” she said. “Instead, they say, ‘I’m sorry.’”
This response only added to their apprehension and made them feel confused and alone.
But the next day, when family and friends filled their hospital room, they loved on Jack and congratulated Carissa and Chris. They were reminded that Jack was the baby they’d prayed for, and he was fearfully and wonderfully made. “We decided that Jack was a gift to our family, and we knew that God would walk through this journey with us,” Carissa said.
One thing that brought Carissa and Chris tremendous comfort was talking with other parents of children with Down syndrome. “What helped the most wasn’t reading books and other resources,” she said. “It was connecting with other moms and hearing about their experiences of parenting a child with Down syndrome.”
These moms’ stories gave Carissa hope. “Every one of them told me that they wouldn’t change anything about their child,” she said. “They would just change the way the world sees their child.”
Carissa started writing a blog about her journey. “I wanted to celebrate Jack’s uniqueness and track his milestones,” she said. She also wanted to show other parents what raising a child with Down syndrome was actually like on a day-to-day basis.
As Jack’s first birthday approached, Carissa wanted to do something special to celebrate his life. “There were tears on the night of his birth, but I promised myself that I’d never cry tears of sadness on his birthday again, but only of joy and celebration for his life,” she said.
Sending love in a basket
Carissa returned to the hospital where Jack was born, taking two gift baskets she’d made with her. She asked the staff to give them to mothers who had delivered babies with Down syndrome. The baskets were filled with toys, blankets, booties, a onesie, and most importantly, a letter that Carissa wrote explaining what she’d learned during her first year as Jack’s mom. “The letter explained that we knew the feelings they were going through, the fears of the future, and what they thought their lives would look like,” she said. “Then I told them that I wouldn’t change one part of who Jack is.”
Carissa described Jack in her letter, saying that he was more similar to his older brother than different. Jack was crawling, laughing, and babbling, and his smile could make anyone’s day. “Many, if not all, of the fears I initially had have not come to fruition,” she wrote. “Our lives don’t look much different than they did before. Plus, we’ve been adopted into the most supportive community of families who have children with Down syndrome.”
The goal of the baskets was to provide these new parents with encouragement and help them celebrate their baby. On Facebook, Carissa connected with a mom who received one of the baskets. The mom said, “The basket meant the world to us. It was the only congratulations we got while in the hospital.”
That comment spurred Carissa to start Jack’s Basket. Since 2014, the nonprofit has celebrated over 5,700 babies, with each family receiving a basket full of hope, connection, and resources. These baskets have brightened the lives of families in all 50 states and in 39 countries. “We want to send love to a family through the basket,” she said. “We want to connect them to resources and remind them that they aren’t alone. We want them to see their baby as a gift.”
A basket can be requested when the baby is diagnosed with Down syndrome, either prenatally or at birth, and any time up until the child’s first birthday. When possible, the baskets are delivered in person by a trained volunteer, who is also the parent of a child with Down syndrome. If in-person delivery isn’t possible, the baskets are shipped to the family’s home.
Baskets can be requested by the parent, a care provider, a family member or friend, or a representative of another Down syndrome community organization. Carissa happily speaks of the impact the baskets have made on the medical community, noting that about 15% of the basket requests this year have come from medical providers who wish to help their patients.
Positive and loving communication
In addition to the basket delivery program, Jack’s Basket is on a mission to equip medical providers with tools to communicate the diagnosis accurately and compassionately. “I want to bridge the gap between medical providers and families raising kids with Down syndrome,” Carissa said. “There is such a disconnect, and misinformation is still given to new families who receive a diagnosis prenatally.”
Between 60% and 90% of babies diagnosed with Down syndrome prenatally are aborted.2 “How many of these babies are aborted based on fear?” Carissa asked. Women “choose to terminate because they are afraid of what life would be like raising a child with Down syndrome.”
For many families, learning of their child’s diagnosis is a traumatic experience. Based on a survey Jack’s Basket conducted of the parents the organization serves, 50% were given the diagnosis over the phone. Further, 45% didn’t have any support person with them when they were told. One mom told Carissa that after her baby’s prenatal diagnosis, she was asked nine separate times if she wanted to terminate her pregnancy.
Jack’s Basket strives to change how the diagnosis of Down syndrome is perceived by medical professionals and how it is delivered to families. Right now, prenatal testing focuses on “looking for ‘bad’ things like Down syndrome,” Carissa said. “We want to partner with medical providers and empower them with tools to communicate and discuss the diagnosis accurately without bias. We want to change the narrative to one of hope.”
In general, medical providers aren’t trained to have these conversations, and they don’t know where to send parents for help when they receive a Down syndrome diagnosis. This information gap may contribute to the high rate of termination.
The Jack’s Basket website (Jacksbasket.org) has an entire section of videos and resources designed specifically for medical providers. One article encourages providers to look for their own bias when sharing a Down syndrome diagnosis. A video offers strategies for providers to share the diagnosis with families in a compassionate way. “We’d like for them to tell parents, ‘I have some unexpected news,’ rather than ‘I have some bad news,’” Carissa said.
A few times each month, Carissa speaks to medical providers in hospitals, clinics, and at conferences. “I share with them from a family’s perspective,” she said. “I tell them that most families receive the Down syndrome diagnosis in a negative way, and I explain the impact that has on the family. Then I share what it’s actually like to raise a child with Down syndrome.”
Jack’s Basket also created a video for medical providers to share with parents whose child has received a diagnosis prenatally. The video tells the stories of four families who are raising children with Down syndrome and offers encouragement from three physicians. “We want to change the prenatal diagnosis experience for families,” Carissa said. “This video provides hope and information that was not previously given to them.”
The overarching theme of this video—and of everything Jack’s Basket does—is that a child with Down syndrome will make the family’s life better. “Jack has brought us such joy, and his life has positively impacted ours in ways we could never have imagined,” Carissa said.
Carissa grieves the countless deaths of babies like Jack who are not given the chance to live. “I didn’t know that when I became Jack’s mom, I would also become his defender,” she said. “I didn’t know that I would have to defend the fact that his life is worth living. My prayer for every family who receives a diagnosis of Down syndrome is that they would take time to grieve the baby they thought they would have and then love the baby they were given.”
For more information or to order a basket, visit Jacksbasket.org.
1. “Prenatal Testing Has Halved the Number of Babies Born with Down Syndrome in Europe, Study Finds,” Massachusetts General Hospital, Science Daily, December 18, 2020, sciencedaily.com/releases/2020/12/201218131911.htm.
2. United States Congress Joint Economic Committee, “Down Syndrome and Social Capital: Assessing the Costs of Selective Abortion,” March 18, 2022, jec.senate.gov/public/index.cfm/republicans/2022/3/down-syndrome-and-social-capital-assessing-the-costs-of-selective-abortion.