Read an Excerpt

Chapter 1
the news
 
“You have a beautiful baby,” the ultrasound technician said quietly. She was studying the flickering images on her screen, staring intently at the shadows of the tiny heart. I think she had already seen that our baby was going to die.
Outside, a cold April rain dripped onto buds waiting to bloom. Inside the darkened hospital exam room, the technician guided the transmitter over my five-and-a-half-months-pregnant belly, interpreting the sound waves that bounced back from our squirming baby. Legs, arms, brain, spine, kidneys—everything perfect. You know we’re here to see the heart, right? we asked. Yes, she did.
Ultrasound exams have become almost a modern ritual of welcoming for expectant parents. No matter how many children you already have, that first look is breathtaking. There’s a person in there! Fingers, a tiny mouth, feet, knees. Sometimes stretching lazily, sometimes rolling over purposefully, sometimes sucking a thumb. Most parents leave with a grainy black-and-white snapshot of a profile of a little face, a cherished image to be displayed on a refrigerator or in an office and later pasted on the first page of a baby book.
Ultrasounds are so routine that it’s easy for parents to suppress the knowledge that the purpose of the exam is not to give them a sneak peek at their unborn child. The Kleenex in the exam rooms is not only for tears of joy.
At our first ultrasound exam at twenty weeks, my husband, Mark, and I brought our four-year-old and two-year-old daughters to see the new baby on “TV.” The technician said our baby looked terrific and very active—so active, in fact, that she couldn’t get a clear look at the heart. She said not to worry, so we didn’t. We were so unconcerned that I went to a follow-up at the clinic four weeks later without Mark, bringing only our girls and some Tootsie Pops to keep them occupied.
“They sent you back just for the heart?” the same technician asked. “I won’t even charge you for this one.” But this time, she looked, and looked, and pressed on my belly harder to look some more. The Tootsie Pops were long gone, wrappers crumpled on the floor, fingers sticky, patience unraveling. She called a doctor in for yet another look. The doctor recommended a Level II ultrasound, a more detailed exam using more sophisticated equipment, “just to be sure.”
So there we were at the hospital, an agonizing week later, trying to believe that the doctor had
only ordered this exam for liability reasons. How relieved we would be to hear that the baby’s heart was fine, to go home and call everybody with
the good news, to say that the only detail we didn’t know was whether we were having a boy or a girl. Mark and I had decided not to learn the baby’s
gender before birth, saving it for a happy surprise. We wanted to know only if that remote, unthinkable possibility came true, if something was terribly wrong.
The technician finally got around to studying
the heart. The rhythmic whooshing seemed to
fill the room, a reassuring sound in any other
circumstances. She fell silent. Looking, pressing on my belly to try to nudge the baby into another position, tapping keys on the machine’s keyboard. Looking. Was that the sound of my baby’s heart
or mine?
Finally, I ventured, “For telling our families—does it look like something is wrong?”
She kept her eyes on the screen and said quietly, “Yes.”
People often use physical terms to try to describe what it feels like to hear devastating news—that it’s like being punched in the stomach, like being hit by a truck, or like the world is crashing in on them. To me it felt like falling backward, as though the tiled concrete floor, the clay underground, all the subterranean layers of rock were simply and soundlessly parting to let me through to some other dimension. I think I might have actually fallen if it wasn’t for that paper-covered steel examining table holding me up at just the right height to turn my head and bury my face in Mark’s warm sweater.
I remember her saying the phrase “hypoplastic left heart syndrome,” which Mark doesn’t remember hearing at all that first day. From somewhere in my memory, I retrieved a medical phrase I never imagined I’d use and asked, “Is it incompatible with life?” She paused and answered, “I’ll let the doctor answer that.”
Clutching wet Kleenex and each other, Mark
and I waited in the darkened room while the
technician left to get a perinatologist, a specialist in high-risk pregnancies. The perinatologist came in and matter-of-factly explained that the left side of our baby’s heart had not developed properly and that the condition was incurable and fatal. Fatal. Our baby. She said the pregnancy likely would continue normally and the baby would be fine until he or she was born, probably around the due date. Once the baby was born, we would have three options. We could try an aggressive series of three open-heart surgeries, beginning with a procedure called the Norwood, which would not be a cure but could possibly keep our baby alive indefinitely. We could try a heart transplant, but the odds of finding an infant donor in time would be low. Or we could provide comfort care, keeping the baby comfortable until death came naturally, probably within four to seven days.
Choked by tears, we asked if our baby would
die peacefully if we decided on comfort care. She said yes.
The doctor recommended an amniocentesis to learn if the baby had any other problems. In an
amniocentesis, the doctor inserts a hollow needle through the mother’s abdomen to withdraw a small amount of amniotic fluid. The fluid is then sent to a lab, where it is examined for chromosomal information. How strange that when your mind is reeling, you hardly even care when somebody pushes a sickeningly long needle into your stomach.
We had one more question, the question we did not want to ask. Was our baby a boy or a girl? The amnio results we would receive in a week or so would tell us for sure, but the ultrasound technician said she thought the baby looked like a boy.
She gave us a printout, an otherworldly profile of his little face.
I carefully tucked it into my purse so it wouldn’t get wet in the rain.
How surreal ordinary things seem after getting
terrible news. Climbing into the car, paying the parking-lot attendant, waiting at a stoplight while hearing the rhythmic whooshing of the windshield wipers sliding the raindrops aside.
Back at home, I brushed past the babysitter and headed straight for our girls. I needed to hold a child of mine in my arms, even if it wasn’t our new baby. The girls were only four and two, but they could tell something was wrong. Mark came in and we all sat on the couch together, Mark holding Elena, and Maria sharing my lap with the baby, who was kicking contentedly inside of me.
“The baby has a sick heart,” Mark began, before starting to cry.
Time is strangely suspended when you have awful news but haven’t shared it yet. The telephone suddenly seems ominous; there is no good way to intrude into your friends’ and families’ daily routines to tell them that they’re about to be plunged along with you into a different world.
Our phone rang first. It was one of my five sisters, Stacy, pregnant with her first child and due just six weeks after me. She knew we had been at the hospital and was calling to hear the news, hoping it was good. I only remember sobbing, “The baby has half a heart.” Then I dialed my parents’ number. My dad answered, and I told him the same thing, and that we thought the baby was a boy. Dad’s mother had died just two weeks earlier, and now it looked as though his grandson was going to die too.
When my mom came home a short while later from running errands, she found him sitting in his favorite chair, crying.
That afternoon, the girls sat drawing at the
dining-room table, one of their favorite pastimes. As she had been doing for months, Elena drew a stick-figure drawing of our family: Mark, me, and three progressively smaller children—herself, Maria, and the new baby. Her drawing was especially neat that day. I remember glancing at it and thinking, Maybe we’ll need that for the baby’s funeral.
I put on my raincoat and went outside to try to wrest last summer’s dead Siberian irises from the earth, my tears and sweat mingling with the rain.
Surprisingly, one of the reactions we didn’t have was denial. Denial is, of course, the first of five stages of grief as classified and popularized by Elisabeth Kübler-Ross in her 1969 classic, On Death and Dying.1 Once we got the diagnosis, neither one of us thought that the doctors must have made some mistake.
There was more of a sense of: So that’s what it is.
Maybe our denial came earlier. Many first-time parents fret over every detail of pregnancy but are much more relaxed during subsequent pregnancies. For us, it was the reverse. My first two pregnancies were for the most part joyous and carefree. Morning sickness was minor, and I basked in the newness and richness of the experience. I looked forward to wearing maternity clothes, and sometimes I’d have to stifle a smile while covering hearings at the state capitol when one of my girls would nearly kick my reporter’s notebook off my belly.
This time, our excitement was occasionally tinged with foreboding. I had never so much as called a nurse or my nurse-midwives with questions during either of my previous pregnancies, but for this one I called several times to ease my unfounded concerns. I worried that my morning sickness was really listeriosis, a type of food poisoning that can cause miscarriage or stillbirth (and happened to be in the news that week). I even abruptly left work one afternoon to drive myself to the clinic, bypassing my nurse-midwives to see an obstetrician I’d never met before. (That particular worry also turned out to be nothing.)
And I vividly remember attending a Christmas concert by the Dale Warland Singers, a nationally acclaimed a cappella choir, at our neighborhood church. For an encore, the choir reverently walked back into the dimly lit sanctuary and began to sing “Silent Night.” The arrangement was bittersweet, its cascading dissonances resolving gently. The voices were hushed, pure, achingly beautiful. Exquisite choral music has often transported me and sometimes moved me to tears. But this was different. I was so overcome not just by emotion but also by grief that I was afraid I was going to break down into great gasping sobs and ruin the moment for everybody in the packed church.
“I’m just so sad. I don’t know why,” I kept repeating to Mark as we walked home under the stars on that clear, frigid Minnesota winter night. If anything, I should have been exhilarated. We had two happy, healthy children, we were blessed with family and friends, we both had jobs we enjoyed, and we had just moved into a 1920s bungalow that I had been enamored with since the moment I stepped into its sun porch. And we were thrilled with our still-private news that we were six weeks pregnant with our third child, whose tiny heart was at that moment beating, growing, forming.
Sleep in heavenly peace.
Perhaps on some level I already knew.