My Heart Can’t Even Believe It 

An excerpt from Amy Silverman’s new book exploring the challenges and joys of raising a child with Down Syndrome

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An interview with Amy Silverman

Amy Silverman, the long-time managing editor of the Phoenix New Times and a regular NPR contributor, is the author of My Heart Can't Even Believe It, which recounts Silverman's journey as the mother of a child with Down syndrome. Silverman also blogs about life with Sophie at girlwithapartyhat.com. She recently talked to the Weekly about the book.

click to enlarge Amy Silverman
  • Amy Silverman

My Heart Can't Even Believe It is about the challenges that you faced in raising your daughter, Sophie, who has Down syndrome. It's a very honest book. You tell the reader how scared you were at first and how hard it was for you to accept the diagnosis, but it's also about the extraordinary love that you have for your daughter and how it's changed you. So talk a little bit about that transformation.

So, I have spent my whole career as a journalist working at an alternative newsweekly where we would write stories about other people, and until Sophie was aware, I really didn't have my own story to tell, and so it really changed my perspective on my career, on my life, on just about everything. I'd also never met anybody with Down syndrome until Sophie was born and diagnosed, so it was an interesting time.

You were surprised. You'd had some tests, but it looked like they were negative.

The pediatrician assured us, he said, "Oh, I know, you and your husband and the nurses all think the baby has Down syndrome, but I can tell you for sure that she doesn't," and he came back a couple of days later kind of sheepish, looking at his shoes, and said "Well, she does have it. But the good news is, there's nothing wrong with her heart, but we'll do a test just in case." And she ended up with heart surgery, too.

That was a double-whammy, so not only were you dealing with the challenge you were going to be facing with her disability, but also a real concern about whether she could survive open-heart surgery.

You know, this is going to sound weird—and I wouldn't wish a baby who needed open-heart surgery on anybody—but trying to explain to people and come to terms with the fact, myself, that Sophie had Down syndrome, was a lot more difficult than saying, "My kid needs open-heart surgery." You don't know what to do. People don't know what to say. Do you say, "I'm sorry your child has Down syndrome?" That's really not politically correct. But everybody's sorry your kid needs open-heart surgery. We can all agree on that. So I ended up with this coping mechanism of calling people and saying, "The baby has Down syndrome, and then, before they could say anything else, saying, "and she needs open-heart surgery." And then, everybody could kind of have some catharsis.

You talk a lot about how long it took you to come to terms with Sophie's disability and your husband, Ray, jumped right in. He was researching, studying up on this stuff.

The more involved member of the couple, for sure.

Why do you think it was difficult for to come to terms with Sophie's disability?

For me? I'm almost 50, but I never was around anyone with an intellectual disability. It was just nothing that I had any comfort with. And here I had grown up as

kind of a smart word-you-can't-say—you know, smart aleck, how about that?

And I just never thought about how to deal with someone with an intellectual disability, and so it's really been incredibly broadening for me, and humbling as well.

One of the things you really do skillfully in this book is talking about the science behind Down syndrome. You weave it in around stories about Sophie and, without getting into the weeds on chromosomes and DNA and such, talk a little bit about what we now know about Down syndrome.

Down syndrome is the most common genetic disorder. They were not able to test for it until relatively recently, just a few decades ago, and, just to get into chromosomes a little bit, where you and I have 46 chromosomes each, Sophie has 47. She has an extra 21st chromosome. And there are very few chromosomes that you can have an extra one of and actually survive, and the 21st is the most common. And what's really fascinating is just in her lifetime we've seen genetic testing start to reveal the things that are common to having an extra 21st chromosome. So things that we kind of knew anecdotally, whether it's physical characteristics or health issues, they're now able to actually see scientifically, so it's a really interesting time.

The other thing you do is you get into the politics of education a little bit in this book, and you have worked really hard to make sure Sophie could attend school with her peer groups and whatnot. Why was that important?

Absolutely from a very early time, we realized that mainstreaming Sophie was so important for us, for her older sister for her, for our family, for her peer group, for everyone around her, and she really rose to the occasion any time we put her in a situation. And the school system for the most part was understanding and willing to work with us, and certainly the laws have evolved tremendously since the time I was in school, but there were still some challenges. The charter school system—which I thought, naively, was set up to give people a lot of choices—actually, the end result of it is that many charter schools end up pushing out kids with special needs. They don't overtly tell you, "Your kid can't come to my school," but they would say, "Ooooh." There was a lot of "Well, I think she might be better off somewhere else," and so I ended up writing quite a bit about that.

The title of the book comes from something Sophie said.

Sophie came up with the title of the book and she's really proud of that. It was probably three or four years ago, I was getting ready to go on a work trip to New York and I had my phone with me, which, apparently I had not had with me the whole time, Sophie had had it, and I noticed that she had taken a whole lot of selfies, like kids tend to do, and then I saw that there was a video on the phone. And she was not pleased at all that I was going to New York without her, and she expressed that. And then, she was talking about how much she loved me, and she said, "I love you so much, my heart can't even believe it."

click to enlarge EVIE CARPENTER
  • Evie Carpenter
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There's a Hole in My Heart That Can Only Be Filled by You

An excerpt from Amy Silverman's new book, My Heart Can Barely Believe It

My extended family is not particularly close. We don't gather for birthdays or Thanksgiving, and there's no guarantee of attendance at weddings or even funerals. But there's one thing that will bring the Silvermans together, and that's a relative in the hospital.

Some of my earliest childhood memories are of walking through the sliding doors of Good Samaritan Hospital in downtown Phoenix, feeling a whoosh as the hot outside air mixed with the icy air conditioning, ushering me inside a grown-up, important place. I loved the gift shop at Scottsdale Memorial Hospital, particularly the flower arrangements you could order that looked like a clown or a shaggy white dog. I didn't know how they did that, but I knew that if I was ever in the hospital (I never was, not till I had babies), that's what I wanted. Years later, as an adult, I was poking around that same gift shop and noticed something in the back of the refrigerator case. A clown flower arrangement! It didn't look as good as I remembered, just a carnation in a cheap vase, decorated with googly eyes and pipe cleaners. But that wave of nostalgia was a huge rush.

Here in the hospital, at the bedside of an elderly grandparent or great aunt, I'd see cousins, aunts, and uncles I hadn't seen in months (or longer), tape my homemade card on the wall, and head down with other visiting family members for what I considered to be an exotic meal in the cafeteria. Even my father, not the most sentimental of souls, often showed up for visiting hours, which tended to involve minor injuries and illnesses. Nothing too serious (I was not brought along on those visits, anyway), and as far as I know, no one in our family ever had a baby with any kind of significant health issue.

Until Sophie.

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On the day of the heart surgery, I found myself in a large, dimly lit room filled with tables and chairs, several of which were occupied by members of my extended family. My grandfather, the patriarch of the Scottsdale, Arizona Silvermans, was there. Even Great Aunt Charlotte, his sister, showed up, and the two of them hadn't spoken in years. This was a big deal; no one dared sneak out to grab frozen yogurt downstairs, and small talk was at a minimum.

Ray and I had been up before dawn that day, giving Sophie one last dose of formula through the feeding tube and packing for the hospital. By then, we were experts at taking care of an infant with a Serious Medical Condition. The sweet nursery I'd decorated so carefully had been transformed over the last few months into something much more clinical, even though I'd tried putting the syringes and tubing packages into cute baskets to keep things looking homey. I pushed the feeding pump aside, hoping that would be the first thing to go when we returned home, grabbed the overflowing diaper bag, and headed out to the car.

After we'd signed in, our first stop at Phoenix Children's Hospital was pre-op, where each patient is assigned a tiny room and given a once-over—blood pressure, temperature, "vitals"—the final all-clear to be cut wide open.

It's also where parents say their good-byes.

Like many children's hospitals, Phoenix Children's has a wonderful art collection, hung just where you need it, as it turns out. There was only one piece of art in the small exam room that barely held Ray, me, the baby, and the diaper bag—a framed painting of a woman in white scrubs handing a large, bright red heart to a small boy in a bed.

I am not a religious person—far from it. But as I've gotten older, I've increasingly been on the lookout for signs, and no more so than on this day, in this stark, fluorescent-lit place, with this baby I couldn't figure out, about to undergo an operation I couldn't begin to describe at the time.

"There's a hole in her heart," was as close as I could come to a medical explanation when anyone asked for details.

My throat caught as I leaned in closer to read the wall text and confirm the artist. I nudged Ray.

"Look," I said, pointing to the wall. "Rose Johnson."

Johnson was a well-known local artist, particularly known to us. Not only was she a frequent contributor to Phoenix New Times, where I've worked for decades, but I'd hired her to illustrate our wedding program several years before; she'd literally camped out on the lawn at the old hotel we'd chosen as a wedding site to capture the height of the palm trees and the curves of the Mediterranean architecture. She even designed a wedding logo, intertwining our names, cactus (for Ray) and roses (for me) around a wedding cake. I had the logo made into a gigantic stamp, and I stuck that image on everything from bakery boxes to goody bags.

I stared hard at the image of the woman and boy till I could see it with my eyes closed. A heart, of all things! Rose Johnson!

I got Sophie out of her infant carrier, the last time I'd lift her by the armpits for several months, careful not to pull out the feeding tube. I smoothed the tape over her face and ran my fingers over her stick-straight hair, trying my hardest to really connect to her, pretending for Ray, myself, the world.

Ray wasn't paying attention to me. He wasn't pretending. He was teary. He held Sophie close, and we both cooed and gurgled and made all the typical baby noises. Then we said, "See you later!"—careful not to use the word good-bye. A nurse put Sophie on a giant gurney and she rolled off into the distance, white fading into white down the hospital corridor, just like in the movies.

About half the babies born with Down syndrome have a congenital heart defect, which means that the heart develops incorrectly in utero, leaving misshapen valves or other problems that might need to be fixed surgically or might resolve themselves on their own. Of all babies with Down syndrome born with heart defects, about half have what Sophie has—atrioventricular septal defect, also called AV canal.

This one requires surgery. It's not uncommon, but it is serious.

I wasn't wrong when I described AV canal as a hole in the heart. The heart can best be described as two pumps with four chambers. The right side pumps to the lungs, the left side pumps to the body, and never the two should meet—unless you have an AV canal defect, in which case the walls between the chambers did not grow in the middle, leaving holes in the atrial septum (at the top of the heart) and the ventricular septum (the bottom). In that case the stronger left side (stronger because it has to pump blood to the whole body rather than just to the lungs) will pump some of the oxygenated blood back into the right side, where it's pretty useless and forces the heart to work harder to provide oxygenated blood to the cells.

None of this is an issue, health-wise, before birth. In his 2004 book, Walk on Water, Michael Ruhlman writes that the heart's fate is decided very early on. He describes how cells come together to form the complex muscle: "The little creature growing around it is not even a fetus yet (at eight weeks old, it's still called an embryo), and this ingenious pump—four chambers, four valves, arteries, veins, and a conduction system—is the size of the head of a pin," he writes.

But, Ruhlman adds, "Defective hearts get along beautifully in the womb, it turns out, happy as demented little pearls."

Despite its complicated apparatus, the heart works as a single pump in utero; the fetus gets oxygen from the mother's placenta, Ruhlman explains. That changes at birth; the heart suddenly has to pump the deoxygenated blood to the lungs and oxygenated blood to the body. And that's when a defect like AV canal becomes a problem.

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Several ultrasound techs missed Sophie's hole in utero (finding a congenital heart defect is often how Down syndrome is discovered in the first place, before birth). Then, once she was born, that pediatrician didn't hear the whooshing that signals a congenital heart defect, particularly one as significant as Sophie's. But the guy who performed the echocardiogram when Sophie was five days old saw it clearly.

Four months later, she was in surgery. As Ray would write at the end of that day in an update to our friends and family, the surgeon patched the hole in Sophie's heart with a piece of her own heart tissue. "In closing the hole, the structures of the valves were complete, allowing the valve 'flaps' to work properly," he explained.

It was a little more involved than that.

After Sophie was whisked away, a team took over in the operating room. She was put under, and the surgeon picked up an electric tool and sawed her chest down the middle. This is called a sternotomy, and observers have described the acrid smell of burning flesh and bone as the saw cuts through the sternum.

Next, Sophie was placed on a heart-lung bypass machine, which made the heart and lungs work and provided oxygenated blood during the operation to keep her alive.

Then her heart was stopped with "carioplegia," an injection of potassium that also protected the heart muscle during the procedure. And then, in a bloodless, beatless environment, the surgeon went about repairing the hole. He opened the pericardial sac, which holds the heart, and removed tissue to patch the hole.

Once the repair was complete, the bypass machine was turned off and the surgeon closed our baby's chest.

The risk of death in AV canal surgery is under 5 percent. But considering we only had a 1 in 214 chance of having a baby with Down syndrome, everyone in the family was looking at odds a little differently that summer.

And as complicated as my relationship was with my younger daughter at the time, I knew one thing for sure: I didn't want Sophie to die.

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More by Jim Nintzel

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