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Life with Anthony

  • Story Highlights
  • Advocacy group: Annually, one in every 733 U.S. babies born with Down syndrome
  • A person with Down syndrome has three copies of chromosome 21, instead two
  • Extra genetic material linked to cardiac defects, mild to moderate cognitive difficulties
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By Margaret Renkl
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Parenting.com

For parents with three small kids -- Michael is 4, Jack's 3, and Anthony is 2 -- Lisa and Mike Spellman are surprisingly calm people. From the jumble of 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.

"Anthony is special -- not because he has special needs but because he has a special personality," says his mom.

In the playroom, Michael and Jack roll their toy cars while Anthony watches, rapt, laughing whenever they do. He's too young to get the joke, but he's fully part of the gang.

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 -- 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, according to the National Down Syndrome Society, 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 now 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 AND? 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.

After Anthony was born, everything seemed fine to Lisa, but the delivery room nurses took the baby 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. He'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 -- but 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, her voice trembles as she remembers: "I got blindsided. 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." Parenting.com: Bringing home a special-needs baby

Coming to terms

Mike and Lisa held each other and cried. "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. "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. "Life is different from what I anticipated, and I had to give myself time to grieve that loss," says Lisa.

Opening up his world

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. His condition isn't life threatening, and the hole will most likely close on its own as he grows.

He does face a daunting array of social and cognitive challenges, but early intervention programs, federally mandated and state administered, can help babies develop crucial speech and motor skills while their brains are still growing rapidly.

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 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.

Many children with Down syndrome are born with a high palate and a thrusting tongue. Parenting.com: Help and resources for parents of kids with disabilities

Aside from speech therapy, Anthony also needed help eating from a spoon. Lori Guimond, a feeding therapist at Vanderbilt University Medical Center, 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. Concentrating, he leans forward, opens his mouth, closes it around the spoon, and pulls back -- perfect! He grins.

Anthony gets occupational therapy and physical therapy once a week with the Vanderbilt Down Syndrome Cllinic'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.

Children 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." To prevent future orthopedic problems, 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 them and plops him down to play with Michael and Jack, Anthony doesn't seem to mind his outfit. He just gives his brothers 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."

To Michael and Jack, Anthony's someone they love who's fun to play with, but studies show that siblings of children with Down syndrome also learn kindness, empathy, and respect for diversity in greater measure than other kids. Parenting.com: A special kind of love

The divorce rate for couples with a disabled child is higher than the national average, but Lisa says, "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? How should they arrange for Anthony's care after they're gone?

For now, though, they're all doing just fine. "Anthony completes our family, and I wouldn't have him any other way," says Lisa. "Every day with Anthony, there's a new discovery, a new joy." E-mail to a friend E-mail to a friend

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Copyright 2009 The Parenting Group. All rights reserved. Reproduction in whole or in part without permission is prohibited.

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

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