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Life With Anthony

For parents with three small kids  -- Michael is 4, Jack's 3, and Anthony is 19 months  -- Lisa and Mike Spellman are surprisingly calm people. From the jumble of bike helmets and bright plastic toys, to the family pictures on every table, to the five baby gates in the downstairs alone, it's obvious that they've happily surrendered to parenthood. Lisa (a former attorney, now an at-home mom) and Mike (a neuroradiologist) take it all in stride, even when the volume in their Nashville house approaches deafening.

In the playroom, Michael and Jack roll their toy cars while Anthony watches, rapt, following their every move and laughing whenever they do. He's too young to get the joke or participate in the game, but he's fully part of the gang. And when he laughs, with his head tilted to one side and his eyes squinched almost closed, he's a redheaded copy of blond Jack.

So when Mike was at his high school reunion on Long Island a while back and going on a bit about the radical changes in his life since he became a dad, he was startled to hear an old friend say sympathetically, "I could never understand what you're going through." Mike just looked at him. "It took me a while to realize what he was talking about," he says.

Devastating news

The friend was talking about Down syndrome, a diagnosis the Spellmans received in the delivery room when Anthony was born. The most common form of Down syndrome  -- named for the British physician who first described its physical traits in 1866  -- is trisomy 21; it's a genetic anomaly in which a person has three copies of the 21st chromosome, instead of the standard two. The extra genetic material is believed to cause hearing loss, impaired vision, respiratory difficulty, and cardiac defects, among other health problems  -- as well as mild to moderate cognitive disability. For Mike's friend, the idea of raising a child with so many problems must have seemed overwhelming.

One in every 733 babies (about 5,500 a year) in the U.S. is born with Down syndrome, most to parents, like the Spellmans, who had no special risk factors. Older mothers are more likely to have a baby with Down syndrome, but 80 percent are born to women under age 35, because more in this age group have kids and, until this year, they weren't routinely tested in the first trimester. But two noninvasive blood tests combined with a new ultrasound can identify Down with 87 percent accuracy at 11 weeks' gestation, without risk of miscarriage. Currently (and controversially), an estimated 90 percent of Down pregnancies are terminated, but this new test may raise that percentage.

Not that it would have changed anything for Lisa.

"Whatever those tests might have revealed, it wouldn't have changed our minds about the pregnancy," she says. When she went into labor, her biggest fear for her baby was prematurity  -- her due date was a full month away.

After Anthony was born, though, everything seemed fine. He wasn't struggling to breathe, his Apgar scores were good, and he pinked right up. The delivery room nurses took him to the nursery, explaining that they wanted the pediatricians making rounds to see him.

When an hour and a half had passed and the nurses weren't back with her baby, Lisa began to worry, and Mike was being very, very quiet. As the minutes ticked by, Lisa kept asking, "Where is he? I want him to start nursing. Where is he? Is something wrong?" Mike, who'd noticed that his new son had many of the telltale signs of Down syndrome  -- a flat face, an upward slant to the eyes, a crease in the middle of each palm  -- hoped he was mistaken and said nothing. "I didn't want to worry Lisa," he says. "What if I was wrong?"

When a doctor finally came in, his look told Mike he wasn't mistaken. Lisa was stunned. Even now, she tears up and her voice trembles as she remembers: "I got blindsided. I couldn't help feeling I'd done something to harm him. You take your prenatal vitamins, buy the bassinet and clothes, then you pack your hospital bag  -- you've prepared for the test. With Down syndrome, for the first time in my life I hadn't prepared for the test."

Margaret Renkl, a contributing editor, wrote "Are We Overmedicating Our Kids?" in the November issue.

Coming to terms

Mike and Lisa held each other and cried. Then they pondered what the rest of their lives would mean. "We thought we'd go down one path, and now the map has changed," Mike told Lisa. "That's all. We have to learn a new path."

Their resolve was bolstered by a visit from their pediatrician, Chris Patton, M.D. He took their hands and said, "There are a lot of things I can't tell you about the future. What I can tell you is that you're going to take Anthony home, and care for him and love him, just as you did Michael and Jack. And beyond that, we'll take it one day at a time."

Still, even as they fell more and more in love with their easygoing third child, they struggled with guilt, says Mike, as he cuddles a sleeping Anthony. "I never for one minute didn't accept him, but I didn't accept his diagnosis right away. Now that seems like such a selfish response."

Beyond the guilt, there was mourning. "For the longest time, every time I'd talk about Anthony I would cry, and I didn't know why," says Lisa. Looking back, she understands: "Life is different from what I anticipated, and I had to give myself time to grieve that loss."

Facing the hurdles

Anthony, like about 50 percent of babies with Down syndrome, was born with a cardiac defect: a tiny hole between the two upper chambers of the heart. Luckily, his condition isn't life threatening. In many babies, the hole closes naturally; if it hasn't by age 3, surgery may be necessary, but it looks like Anthony's will close on its own.

Vision and hearing problems are common, too; Anthony wears glasses to correct severe nearsightedness in one eye. Like many other kids with Down syndrome, he has very small eustachian tubes that can cause fluid to pool behind the eardrums. Recent surgery  -- putting in the same kind of tubes kids prone to ear infections get  -- successfully dealt with the problem, so Anthony will not need a hearing aid.

He also faces a daunting array of social and cognitive challenges, but there's good news for him  -- and for kids with other disabilities that cause developmental delays, such as cerebral palsy and autism: Early-intervention programs, federally mandated and state administered, can help babies develop crucial speech and motor skills while their brains are still growing rapidly.

Early intervention educates parents, too. "They learn a lot about child development and can become their child's best teachers," says Karen Summar, M.D., director of the Down Syndrome Clinic at Vanderbilt Children's Hospital in Nashville and mom of a teenager with Down syndrome. The support is priceless, says Lisa. "I'd always thought I could do it all myself. But I'll tell you what  -- I accept help now! With early intervention, I'm not alone. I have a resource."

Opening up his world

At about 6 weeks, Anthony began sessions coordinated by Tennessee Early Intervention System. Amy Hirt, a parent adviser trained in child development, comes to the house weekly to watch Anthony and suggest ways Lisa can incorporate therapy techniques into everyday activities. At 8 months, for instance, if Anthony reached out with one hand to pick up a toy, he'd put down the toy in the other hand. (Typically developing children can hold a toy in each hand by that age.) So Hirt showed Lisa how to help him hold an object in each hand, or to pass an object from one hand to another. Even Michael gets into the spirit, holding out a toy and encouraging his baby brother: "Get it, Anthony. You can get it!"

Many children with Down syndrome are born with a high palate and a thrusting tongue. Aside from speech therapy, Anthony also needed help eating from a spoon. Lori Guimond, a feeding therapist at Vanderbilt Children's Hospital, suggested a special spoon with a very shallow bowl, and she taught Lisa to stop doing what all mothers do  -- scraping the spoon against the top of the baby's mouth. Anthony needed to learn to take the food off the spoon himself. Demonstrating, Lisa offers Anthony a spoonful of applesauce. Clearly concentrating, he leans forward, opens his mouth, closes it around the spoon, and pulls back  -- perfect. Lisa puts down the empty spoon to clap, squealing "Good boy!" as he grins broadly.

Anthony also gets occupational therapy monthly and physical therapy once a week with the Vanderbilt clinic's Pediatric Rehabilitation Services. Occupational therapy helps kids hone fine motor skills such as reaching out, grasping a peg, and pulling it out of a board  -- motions necessary, later on, for the daily tasks of independent living, like turning a doorknob and brushing their teeth. Physical therapy helps them develop gross motor skills needed to roll over, sit up, and stand.

Kids with Down syndrome tend to have both low muscle tone and hyperflexible joints. When Anthony lies on his belly, his legs flop open, "frog style." Without early intervention, most children with Down syndrome compensate by learning to sit up, to crawl, and then to walk in ways that stress joints and can lead to orthopedic problems as an adult.

So Anthony wears "Hip Helpers"  -- spandex shorts that are sewn together from the crotch to the knees  -- whenever he's playing on the floor. When Lisa shimmies him into the Hip Helpers and plops him down to play with his brothers, Anthony doesn't seem to mind his outfit. He scoots over to a stuffed Tigger and gnaws on its ear. Jack leans down to get a closer look. Anthony takes time out from Tigger to give his brother a big, slobbery smile.

Loving one-of-a-kind Anthony

For the Spellmans, that smile helps define their youngest son. Lisa says, "Anthony is special  -- not because he has special needs but because he has a special personality. He smiles and laughs all the time." For a while, Lisa and Mike wondered if their third child's even temperament  -- loving, calm, easily soothed  -- was a trait associated with his disability. "It's not because he has Down syndrome," says Dr. Patton. "It's because he's Anthony. That's just his personality."

To Michael and Jack, he's their baby brother, someone to play with, but studies show that siblings of children with Down syndrome learn kindness, empathy, and respect for diversity in greater measure than other kids. (And in turn, typically developing siblings can become inspiring role models for kids with Down syndrome.)

The divorce rate for couples with a disabled child is higher than the national average, but Lisa says, "Maybe it could have gone the other way, but our bond has only gotten stronger. You have to talk about so many issues  -- you have to communicate." Mike agrees: "We don't know where we're going, but we're going together."

Fears and hopes

The Spellmans face many questions in the years to come: Should they send Anthony to a school for special-needs kids or let him be mainstreamed with his brothers? Will other kids tease him because he's different? With new prenatal tests potentially causing a drop in the Down syndrome birthrate, will he have trouble finding friends as an adult? What about getting a job and living on his own someday? Will he marry? How should they arrange for Anthony's care after they're gone?

For now, though, he and his family are doing just fine. "I've seen Lisa go from being anxious at every visit to happily coming in for just a well check," says Dr. Patton. "They've all made a very long journey, and I see a sparkle, a love that's been blossoming since the moment they laid hands on that little guy."

Lisa remembers that after Anthony was born, the mom of a child with Down syndrome told her, "I know the deep, dark place you're in right now, and you're not going to be there forever." That prediction has come true.

"Anthony completes our family, and I wouldn't have him any other way," says Lisa. "He'll be teaching us all our lives  -- he's already taught me so much about patience. I see how hard he works to sit up, or to reach out for a toy, or to get up on all fours.

"You take for granted how easily things come to you, and to your other kids, but every day with Anthony, there's a new discovery, a new joy."