It’s usually a surprise, but it doesn’t have to be bad news.
Because she believes the way a parent is informed that they have given birth to — or are pregnant with — a child with Down syndrome can have a significant impact on their mental health, Carissa Carroll, co-founder of Jack’s Basket, an Arden Hills-based nonprofit focused on providing support to parents of children with the syndrome, helped develop “Communicating Unexpected News,” a new curriculum designed to help health care providers bring a more optimistic and supportive approach to sharing this diagnosis with parents.
While attitudes and outlook have changed, it wasn’t so long ago that a diagnosis of Down syndrome was considered nothing but bad news, Carroll, 43, said.
“If I would’ve been born with Down syndrome, my parents could’ve been told, ‘You don’t have to take this child home,’” she explained. “Not that long ago, we physically institutionalized children with Down syndrome.” Carroll believes this practice impacted parents’ mental health as well as their ability to build healthy relationships with their children, especially those who were raised separately from their biological families.
While few infants with Down syndrome are now institutionalized, a continuing negative attitude about the syndrome plays a role in the way the diagnosis is delivered, Carroll said: “Today that attitude still exists in how we institutionalize these babies with our words.”
The free online curriculum is worth 10 continuing medical education (CME) credits. Carroll developed “Communicating Unexpected News” in collaboration with her friend Dr. Erin Plummer, a neonatologist at Children’s Minnesota who often cares for newborns with Down syndrome. Earlier, the two had created a prenatal consult film for maternal-fetal medicine and obstetrics physicians. After that project was completed, Carroll recalled, Plummer said, “’We need to create a curriculum.’ It was just that important to get families started on a more optimistic footing.”
‘Just love me’
Carroll knows better than anyone that the way a Down syndrome diagnosis is delivered can have a lasting impact on how a parent views their baby — and their future. Nearly 11 years ago, she gave birth to Jack, her middle child, via emergency cesarean section. She was put under general anesthesia for the procedure so she didn’t see her son immediately after he was born.
“I awoke to a woman saying my name,” Carroll recalled. “I asked her, ‘Can you get my husband?’ She said, ‘After you recover you can be with him and your new baby.’”
While Carroll was in the recovery room, a nurse practitioner brought the newborn Jack to her husband, Chris.
“She held out the baby and said to him, ‘Are you aware of trisomy 21?’” Carroll said. “He must have looked confused, because she said, ‘It’s also known as Down syndrome.’ She listed the characteristics that Jack was showing, then she said, ‘Just enjoy your baby,’ and abruptly left the room.”
Because Chris didn’t know much about Down syndrome, he didn’t know how to react, Carroll said. He felt shocked and afraid. “He didn’t know what that meant for our new baby,” she said. When Carroll was wheeled in to meet her son, she recalled, “Chris had to share the diagnosis with me. I wasn’t prepared for him to say, ‘This is our baby and they think he has Down syndrome.’”
Carroll said her first reaction to the news was “shock, confusion and fear. I thought, ‘How will this change us?’ I didn’t know how this would impact the two year old I already had at home or how it would affect our marriage. There was also that fear of the unknown, that doubting, thinking, ‘How am I going to do this?’”
While the couple was still reeling from the shock of their son’s diagnosis, something happened that changed the way they looked at him.
“I always look back at this moment where one of the nurses — her name’s Diane — came in, looked at Jack in his bassinet and said, ‘Look at your precious baby.’ I feared that the world wouldn’t accept my son because he was different. Then a complete stranger came in and recognized him as precious.”
The nurse’s words did much to shift Carroll’s attitude about her son. While she knew they would face challenges in the coming years, she remembered an important reality: Jack was their child and he deserved their love and attention.
“I was so focused on all the things he’d need in his life and then she reminded me that he’s a baby,” Carroll said. “That’s the moment that really changed my perspective. At first, all I could think about was his diagnosis. I assumed my life was going to revolve around Down syndrome. But Jack’s our child first: It does not.”
Refocusing herself on the reality that she had a precious new child to love and care for didn’t take away all of Carroll’s concerns. She soon learned that many children with Down syndrome have endocardial cushion defect, a heart condition, and may need a series of surgeries. She also worried about how Jack would be accepted by other people and whether he’d have a happy life.
“Overwhelm was a feeling I had,” Carroll said. “I thought, ‘How will this change us?’ ‘What will he need? I was researching all the books. I was still grieving for what I wanted and what I had envisioned for my future.” But she had a newborn to care for, and he made it clear that he needed her: “Jack kept reminding me, ‘Just love me. That’s what I need right now.’ There was a point where I had to surrender my plans.”
Letting go of her careful plans for her future took time, but Carroll eventually was able to accept this new reality, move on and see the many positive things that Jack brings to the world.
“Jack is the most unconditionally loving person who would be the first to forgive anyone who hurt him,” Carroll said. “Just being around him improves my mental health. The joy that he brings to the world is so amazing. He helps us appreciate the little things that we would’ve taken for granted.”
Shifting the narrative
Curriculum like “Communicating Unexpected News” is much needed, say Minnesota Down Syndrome advocates. Tracy Hafeman, Down Syndrome Association of Minnesota’s senior director of child and family programs, said that she can usually detect how a family was informed of their child’s diagnosis during their first interaction.
“In most cases it is fairly easy for me to figure out who received this news in a positive way versus who received it in a negative way,” Hafeman said. “The parents who heard positive and uplifting words from their provider tend to have a more optimistic view of the journey ahead of them. Those whose providers shared their diagnosis with a focus on the negative tend to approach their journey with more apprehension or fear.”
Gabby Granger, programs and marketing manager for the Twin Cities branch of Gigi’s Playhouse, a nonprofit achievement center for people with Down syndrome, said that medical professionals used a negative approach when they told her parents of her younger sister Ava’s Down syndrome diagnosis.
“My mom talked about how she was given the news,” Granger said. “It was like, ‘I’m sorry.’ It took a toll on my parents. It was unexpected. They were a little shell-shocked.” That shell-shocked feeling is natural, she said, but she believes that things would have been easier for her parents if the information had been shared in a more optimistic way.
“When this diagnosis comes you have no idea how your child’s health will play out,” Granger said. “It can be a lot for the parents to take in. How it is delivered is very important.”
Hafeman applauds Carroll and Plumber for their work on the curriculum. She also said she’s beginning to see an important attitude change from the state’s medical community.
“We were invited by the U of M to speak to their second-year genetic counseling students,” Hafeman said. “They really want to have a relationship with our program.” She and her colleagues assembled a panel of parents who had received a prenatal diagnosis of Down Syndrome to share their experience not only receiving the diagnosis but also what it is like raising their child.
The students were interested and attentive, Hafeman recalled: “They said, ‘Can you tell us a story or stories about the way your child has had a positive impact on your life?’ They want to hear these kinds of stories from parents so they have those stories to share with their families.”
While many of the genetic counseling students had experience interacting with people with Down syndrome and an understanding that their lives could be happy and full, Hafeman said that she and the panelists had one message they wanted to make clear to them.
“Genetic counselors have an obligation to provide information about the medical complexities that could come with that diagnosis,” Hafeman said. “Our ask was, ‘Could you sandwich that information? Can you start with something good, something positive, something hopeful — and then end that conversation with another positive or hopeful piece?’ They were super-responsive to that.”
This approach — of combining clear medical information with positive real-life stories about the experience of people with Down syndrome and their families — is responsible and humane, Hafeman said. Carroll’s new curriculum further supports that.
“We want parents to start off that journey with a piece of hope,” Hafeman said. “If you don’t feel hopeful, your mental health is likely to suffer.”
Beyond sharing positive stories about life with Down syndrome, Carroll said it is also important for medical professionals to provide information about organizations and services that support people with the syndrome and their loved ones. Her nonprofit provides that kind of information along with congratulatory baby gifts and uplifting family testimonials in the baskets they deliver to parents of children born with Down syndrome, but it’s hard to reach everyone. She and her colleagues still have their work cut out for them.
“We were just at the Society for Maternal-Fetal Medicine conference in Washington, D.C., about three weeks ago,” Carroll said. “All of these providers are giving unexpected news daily. I asked them, ‘When’s the last time you gave a trisomy 21 diagnosis?’ They said, ‘I gave one last week.’ I asked, ‘What resources are you giving them?’ About 75% of them did not give patients anything.”
The shift to positive messaging has happened more completely with many serious diseases, Carroll said. The same still cannot be said for Down syndrome.
“My friend who had breast cancer also has a child with Down syndrome,” Carroll said. “She told me, ‘When I got the Down syndrome diagnosis, everyone was sad, but when I got my breast cancer diagnosis there was so much hope around it.’” That difference feels stark, she said, and she hopes that “Communicating Unexpected News” will go a long way to continue a new approach to care.“There is a thriving community out there that says, ‘We are the lucky few: Not everyone will have a child with Down syndrome, but we do.’ I can honestly tell you I would not change Jack if I could. He’s helped me to be more understanding and empathetic about other people’s experiences. He’s changed my life for the better.”
Andy Steiner
Andy Steiner is a Twin Cities-based writer and editor. Before becoming a full-time freelancer, she worked as senior editor at Utne Reader and editor of the Minnesota Women’s Press. Email her at asteiner@minnpost.com.
