The first thing Emily noticed, right after the doctor said “it’s a girl,” was the shape of her baby’s pinkie finger. Within seconds of seeing Delaney, she told everyone in the hospital room that her daughter had Down syndrome, then repeated aloud: “I love her. I love her. I love her.”
“There’s nothing wrong with this baby,” the doctor told her.
“She has Down syndrome,” Emily said. “I can tell.”
Nurses ran tests on the 6-pound, 9-ounce newborn and the doctor continued to examine her. About an hour later, he told Emily she was right: Her baby had trisomy 21. The most commonly occurring chromosomal condition, also known as Down syndrome, trisomy 21 affects about one in every 700 babies born in the U.S., according to the National Down Syndrome Society. People who have the disorder, which is caused by an error in cell division that results in an extra copy of chromosome 21, are at an increased risk for congenital heart defects, respiratory, vision and hearing problems, Alzheimer’s disease, childhood leukemia and other medical conditions. In the early ’80s, the life expectancy for someone born with Down syndrome was 25 years; now it’s 60.
“I just remember people waiting outside the hospital room, not knowing what to say when they came in,” Emily says through tears. It was almost as if nobody thought they should congratulate her. “I felt bad for them.”
She knew Mark was struggling. He walked around in a daze, leaving the hospital the day after Delaney arrived to go home and check on the dog. A neighbor came outside for news about the baby. “What’s the matter?” she asked. He didn’t know until then that the woman had a grandchild with Down syndrome, and she was the second person he’d met in two days—a friend of his sister’s, who has a daughter with the condition, had already shown up at the hospital. “I felt like I was on an island by myself, when the reality was we were surrounded by it,” Mark says.
When he returned to the hospital the following morning, he handed Emily a manila envelope he’d found in the couple’s mailbox. “We’re gonna be OK,” he said.
“I know,” she replied. “What’s changed your mind?”
A woman Emily worked with had dropped off a copy of “Welcome to Holland,” an essay by Emily Perl Kingsley, the mother of a child with Down syndrome. “You’re on a plane and you’re heading to Italy and you’ve planned this trip your whole life—you have all the stuff you need for Italy, and then you end up landing in Holland and you’re like, wait a second, I’m not equipped for this. I don’t have any information. How will I get around Holland?” Emily explains. “Then you realize there are tour guides, and beautiful things like Rembrandt, and tulips…and you can get through Holland, and it’s a beautiful place, too.”
For the next few days, doctors kept a close eye on Delaney, and a cardiologist told the couple when she was less than a week old that the faint murmur he’d heard in her chest was the result of a life-threatening heart defect.
Delaney would need surgery to correct the problem—called atrioventricular canal defect—but they didn’t want to operate until she weighed 11 pounds.
“It was crushing,” Emily says, “but it was almost like you’re on autopilot. Doctors start coming in and telling you what has to happen, and you just don’t know. You have no idea, so you just go with it. Then you read that a lot of people with Down syndrome are born with this, and it’s a common surgery, and you let the doctors take the reins. And you take notes.”
Later that week, a nurse came into Emily’s room to check on her around 4 a.m. and saw that she was falling apart. “Talk to me,” the woman said.
“I just want her to be happy,” Emily told her. “I just want her to have friends.”
“You are feeling what every first-time parent feels,” the nurse said. In that moment, Emily realized that she wasn’t the scared new mom of a baby with Down syndrome. She was just a scared new mom.
A few hours before Walter Johnson’s homecoming dance in the fall, Delaney and two of her girlfriends are taking pictures in the Dunigans’ living room. “All right, my girlies,” she says as they pose. Delaney sits down on the couch and puts her arm around Gina, a friend she’s known since both were babies. It was Gina’s mom, Liz Baldini, who visited Mark and Emily at the hospital 18 years ago, never having met them before, just to let them know they weren’t alone.
“Ready to see cute boys tonight?” Delaney asks.
Last year, a young man named Reilly took Delaney and Gina to homecoming, as friends, and showed up with flowers for both of them. Tonight a bunch of Delaney’s classmates are meeting at Pizzeria Da Marco in Bethesda—the parents are sitting at a different table—then heading to the school dance. When Delaney was shopping for her dress, a sleeveless scoop-neck with a white top and pink bottom, it bothered her a little that people would be able to see the scar from her second heart surgery—at 6, she shocked Emily by saying, “Thank you for saving me,” when the surgeon walked in—but she’s over that now.
“Mom, I think I may stay out a little bit late,” she says in the car on the way to dinner.
“You can stay as long as you want, sweetie,” Emily tells her.
These are the kind of nights Delaney’s parents weren’t sure would ever happen. There were too many unknowns. Her heart problems showed up as soon as she got home from the hospital in September 1998. A close friend of Emily’s, who happened to be a doctor, came over to meet Delaney when she was a week old and noticed that her lips were turning a bluish-gray. The cardiologist had warned Emily and Mark that there might be times their daughter needed extra oxygen. “This is what they’re talking about,” her friend said. They quickly put Delaney in the car.
“When you walk in those doors, don’t say anything but ‘I have a blue baby,’ ” he told Emily as they rushed to the hospital. “Don’t say: ‘I think it’s happening but I’m not sure.’ You say nothing else.”
After that, Emily was scared to take her eyes off her daughter. “We went to Children’s ER, Georgetown’s ER, Suburban, Holy Cross, Shady Grove—it just depended on where I was,” she says. They saw specialist after specialist and kept hearing things about Delaney’s poor muscle tone. It wasn’t just her arms and legs that doctors were concerned about—they didn’t know how well she would be able to formulate words or chew her food. “It was a wave of negativity from the time she was born,” says Mark, who still treasures the times Delaney would nap on his chest while he watched Redskins games.
Mark did the family’s Christmas shopping in the gift shop at Shady Grove hospital that year, where 3-month-old Delaney was spending a week. She spiked a 104-degree fever, and doctors thought she might have meningitis; it turned out to be early signs of congestive heart failure. After Delaney’s first heart surgery in February 1999, she went from drinking an ounce of formula and falling asleep to polishing off a 3-ounce bottle. She cried more because she finally had energy.
“I just remember sitting there thinking, this is a miracle—everything the cardiologist said would happen, happened,” Emily says.
The following September, Mark and Emily invited more than a hundred people over for Delaney’s first birthday. They took pictures of a moment they’d been waiting to celebrate: their daughter sitting up on her own, which she’d just started doing, rubbing her hands in the cake.