Family Wants To Reframe Down Syndrome Diagnosis
Chris Carroll sat, stunned, in his wife’s empty hospital room on March 25, 2013.
After a precipitous drop in their unborn baby’s heartbeat, Carissa Carroll had been rushed into surgery for an emergency Cesarean section at a Minnesota hospital. It was an abrupt and frightening end to what had been a fairly routine second pregnancy for Carissa, then 32 years old.
Eventually, while Carissa was in the recovery room, a nurse returned and handed the father his newborn son; the couple’s second child, Jack.
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“Are you aware of Trisomy 21?” the nurse asked.
Chris was confused.
“I am not sure what you are saying?” he replied.
“Down syndrome,” the nurse said.
Eventually, Chris realized what the nurse was trying to say: Jack was showing some of the signs of Down syndrome, also known as Trisomy 21, a genetic condition in which a child is born with three copies of the 21st chromosome.
The whole conversation felt off — bewildering, confusing, assuming.
After the nurse left, father and baby waited in the room, alone, for about an hour and a half. Finally, Carissa was wheeled back in.
“This is our baby,” her husband told her, “and they think he has Down syndrome.”
Carissa cried out.
“I was coming out of this whirlwind of a delivery, still processing that, when he gave me this news,” she says. “I think we were both in shock.”
The next day, a different nurse helped Carissa, a physical education teacher, and Chris, a Bethel University professor, see beyond a diagnosis.
“She came into our room, looked at our baby and said, ‘This is your precious baby,'” Carissa says. “We realized, ‘Yes! He is our precious baby.
“We’ve always known through our faith that each child is ‘fearfully and wonderfully made,’ but it took us some time, as this nurse put it, ‘to grieve the baby we thought, and love the baby we were given.'”
Just like the pregnancy with her firstborn, Luke, Carissa had measured smaller than normal. Just like her first pregnancy, though, follow-up ultrasounds found nothing amiss. Both times, the Shoreview, Minn. couple decided against any invasive testing, such as amniocentesis.
“It wouldn’t have changed our decision to continue with the pregnancy,” Carissa says now. “But I guess we made the assumption that, if we did get an unexpected diagnosis at the birth, that it would be told to us in a sensitive way by health-care professionals. I now know that is not always the case.”
“I’ve been asked what would be the ‘perfect’ way to be told,” she says. “First, don’t say, ‘I’m sorry’ or ‘Unfortunately, I have bad news.’ Wait until the parents are together and say, ‘I have unexpected news.’ Because that is the truth. Families are going to respond in a variety of ways, but, as I’ve told hospital staff, how you treat them in the first few moments is so crucial to their ability to accept their new life.”
Eighteen months later, Carissa is on a mission to help hospital staff during these moments; she’s doing so one gift basket at a time.
The idea came to Carissa as Jack’s first birthday approached.
“I thought, ‘Let’s celebrate his birthday by going back to the hospital and delivering baskets to other families like ours,'” Carissa says. “Baskets with some gifts and a letter, saying what our son means to us.”
The letter begins:
“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 …”
Later, Carissa learned about the ripple effect.
“When I brought those baskets to the hospital on Jack’s first birthday, I didn’t know who had gotten them or if there had even been any babies born with Down syndrome,” Carissa says. “I heard later, through Facebook, about a mom who had received one of the baskets while her son was in the (neonatal intensive care unit). She said it meant the world to them; it was the only congratulations they received while at the hospital.
“It was so great to hear that they had received the basket,” Carissa says. “At the same time, it was really heartbreaking.”
Carissa has now teamed up with GiGi’s Playhouse Twin Cities, a Down syndrome achievement center, to get more baskets into more local hospitals. After a recent report on local television, Jack’s Basket has an even higher profile.
“Donations are coming in from as far away as Hawaii,” Carissa says.
The mission of the basket is simple: to celebrate every child born with Down syndrome and congratulate the family with gifts, support and resources.
The gift baskets cost about $60 to create. Currently, they include letters from Carissa and another family whose child has Down syndrome; information about local resources; a hand-knit blanket and a hand-knit hat and booties; a couple of baby toys; a violin lullaby CD; and, soon, a paperback copy of Kelle Hampton’s memoir, “Bloom: Finding Beauty in the Unexpected,” about the mommy blogger’s own unexpected journey after her daughter Nella’s birth.
“I want it to be a combination of a few gifts and a few resources,” Carissa says. “It’s not just a bunch of information about Down syndrome. It’s really a welcome: A baby has been born, you still need to celebrate.”