In the beginning there is, of course, the pregnancy: nausea, denial and finally the pee test, the undeniable color blue. There are two phone calls to a clinic in Boston: “I need to schedule an abortion.” There are two appointments made, and there are two no-shows. There are a lot of arguments, mostly with my mother. They are all remarkably similar.
“Your life is going to be very different with a baby around,” she’d say.
“Good,” I’d say. “I can use a change.”
“What about graduate school?” she’d say.
“Graduate school will wait,” I’d say.
“And how, pray tell, are you going to take care of a baby?”
“I’m not a teen-ager. I’m 24 years old. I have a college degree.”
“You just have all the answers, don’t you?”
“Mom, it’s my life.”
“You always do exactly what you want to do.”
“And your point would be?”
But she adjusts. We all do.
“So you’ve got a bun in the oven?” my grandfather cackles.
“I just can’t wait to get my hands on that baby,” crows my grandmother.
Even my cautious sister—a volunteer at the battered-women’s shelter that is helping me through a tangle of court hearings, phone taps, restraining orders and police reports about my ex-boyfriend and his temper—changes her tune. “I Just Picked Out Bunny Fabric to Make a Quilt for the Baby” replaces the soulful blues riff that had become her standard: “Do You Really Want to Be Tied to This Jerk Forever?” She says the baby will be a blob for the first year—before she became a volunteer, she was a nanny. Thus there will be plenty of time for all of us to be seduced by the idea of a blob and then by the blob itself, plenty of time to change the dials on our radios to the station that plays the lullaby hit parade of the 3-feet-tall-and-under crowd. And so I begin my quiet surveillance of the babies and pregnant women I see around me—suddenly they are everywhere, at the grocery store, in line to use the toilet in the ladies room—and the slow scooping-out of my own small place in that oh-so-huge and overwhelming institution we all know and love: motherhood.
I am peeing at 5 a.m. about two months before my due date. My taut abdomen has just recently begun to rest on my lap whenever I sit down. I simultaneously feel and hear a small pop. A pinprick. That didn’t happen, I think, Denial. I go back to bed. I shift my weight. An undeniable trickle. I better check. I stand up. An undeniable tidal wave.
I give her a name before I know what is to come, while we—my parents, my sister and I—are high on her arrival and her seeming good health, despite her prematurity. We search through name books in the hospital.
“How about ‘Savannah’?” my sister says.
“Oh, that’s nice,” says my mother.
“Then she’d be ‘Vanna’ for short. ‘Vanna White,’—’Wheel of Fortune.’ Need I say more?” I say.
“How about ‘Lily’?” my father says.
“Oh, that’s nice,” says my mother.
“‘Lily’? Hello. ‘Lily White’? We might as well call her ‘Snow,’” I say. Then, “How about ‘Madeline’?”
“‘Madeline’? No way. Absolutely not,” says my sister. “When I was in the second grade, I knew a Madeline and hated her. She threw sand in my eyes.”
But at midnight, 28 hours after she was born and after my family has gone home to sleep, I creep down the hall from the birthing pavilion to the intensive-care nursery and tell the nurse, “No more ‘Baby Girl White.’ Her name is Chloe.” Of course, when my family finds out in the morning, they think it is perfect. I later discover it means “Bloom of Health.”
DARTMOUTH-HITCHCOCK MEDICAL CENTER DISCHARGE SUMMARY
Summary of Presentation and Course:
Chloe is a 33 ½ week female infant who was horn at 8 p.m. on 1/28 to a 25-year-old woman who is O+, had negative prenatal screens, and who used no tobacco or alcohol during the pregnancy. The pregnancy was uncomplicated, and she had good prenatal care. At about 3 minutes of age, the infant was intubated because of inability to ventilate with mask and persistent low heart rate.
Chloe was weaned to extubation on day one of life, 1/29/94, and remained stable until day four, 2/1/94, when respiratory distress was noted. At the same time, her cardiac abnormalities became apparent and were worked up.
A murmur was noted on 1/29/94 and increased in intensity over the next two days. On physical exam, the infant was retracting mildly to moderately with intermittent flaring. All pulses were diminished. Echocardiogram showed the left ventricle was severely hypoplastic.
Chloe White is being transferred on 2/3/94 by ambulance to Boston Children’s Hospital for cardiac surgery.
There is a point when I ask Chloe’s neonatologist about her chosen specialty: Doesn’t it depress her to work with such critically ill babies? Every baby in the nursery has gotten off on the ultimate wrong foot, awakened on the very worst side of the bed. Most of them seem as if they will be consigned there forever. But she breaks into a smile of genuine surprise. “Why, no,” she tells me, “it’s just the opposite. These babies are all about beginnings, all about possibility … in other specialties there are many more endings. These babies are closer to life than they are to death.”
And for a while Chloe is very close to life. Close enough that we think about transferring her to a less-sophisticated hospital, close enough to be held and to try breast-feeding. But then she isn’t close. One phone call, a few words. “It’s her heart. It’s very serious.”
For the first time I hear the phrase hypoplastic left heart syndrome. I am confused and breathless, as a stranger, a pediatric cardiologist—who knew there was such a thing?—tries to explain that it is the most common form of single-ventricle heart defects, that it accounts for 25 percent of cardiac-related mortality in the first week of life. He says something about certain death within the first month of life if left untreated. In an instant Chloe is closer to death and a giant-step away from life. Lots of giant-steps, too many, Mother-May-I, to count.
The drama addict, the emotional-roller-coaster rider, the crisis creator. Who am I kidding? Stop the bus and let me out! Excuse me, that was my stop, back there! An unplanned pregnancy; that’s one thing. A premature baby; that’s one thing. But my daughter born with a complex congenital heart defect? Totally another thing altogether. Apples and oranges. Oh, waiter! Yoo hoo! I’d like to change my order! No more roller-coaster rides, I promise! Down deep I’ve always liked the merry-go-round. In fact, I’ve loved it. So with that in mind, I’ll take a sprinkle of the mundane, please, a little normalcy, too, and, oh, yes, one brand, spanking new, anatomically correct heart for the small, bald one—to go.
I learn that hypoplastic left heart syndrome means, in effect, that Chloe has no functioning left ventricle. It also means that she might not live long enough to leave the hospital. Instead of booties and teddy bears, it’s all about intravenous lines, a respirator, morphine, chest tubes. The burning questions of my pregnancy—Breast or bottle? Disposable or cloth?—vanish. They are replaced by new questions. Transplant or three open-heart surgeries? Life or death?
She is paralyzed with drugs so that every aspect of her physiology can be controlled. This child—who at 5 ½ pounds is the heavyweight champ at the intensive-care nursery—can’t even tolerate room air by the time she arrives in Boston; it provides her with too much oxygen. Too much oxygen? She moves to underdog status that fast, and I am told not to go far. A nitrogen tank is hooked up to her respirator. Fingers are crossed. We’ll talk more about surgery if she makes it through the night.
The screen above her bed displays her blood pressure, heart rate, respirations and oxygen saturation. Blip. Blip. Blip. It tells me she is alive.
My sister and I move in a daze through life at the hospital. Our eyes are puffy from crying and lack of sleep. We are strangers in a foreign land. We are extras on the set of “Dawn of the Dead.” We are blindsided cartoon characters with X’s for eyes and little birds chirping in circles around our heads. We are women obsessed with tossing coins into the fountain in the hospital lobby. A penny for every entrance, a penny for every exit. In the center of the fountain is a statue, a frog on a lily pad. A coin on the lily pad and, Mama, you are home free, your wish is granted, hands down, no questions asked. I develop great aim. I also develop big, circular stains on the fronts of all my shirts as my milk comes in. Meanwhile my father, a healthcare consultant, shakes hands with all the doctors—neonatologists, cardiologists, surgeons, anesthesiologists. My mother asks about discount parking rates for family members of patients.
I wish I had paid more attention during biology class in high school. Now I pore over medical books.
Chloe doesn’t have to have an operation. I can fight to bring her home. Or put her on the list for a heart transplant. In the end choosing one option over another is like shopping for a used car at three different lemon lots. You need transportation. None of the choices is appealing. High-pressure sales tactics. Fluorescent showroom lights. You want something reliable.
At the first lot, a conservative Midwestern salesman quietly says, “Comfort, ma’am, is the key. Take the child home. Make her comfortable until she passes away. The surgeries? Very low success rate. A heart transplant? Excruciating pain.”
At the second lot, a California salesman in flashy plaid says, “I have one word for you: transplant. Buy this month, before the child’s immune system is fully developed. This offer won’t last!”
At the third lot, the dashing Harvard graduate, with his eyes on publication and research grants, says, “We can rebuild! Yes, it will take three operations, but we won’t have to wait for a donor heart; we won’t have to worry about immunosuppressant drugs that cause cancer; we won’t have to remove a heart that can work—albeit not like mine or yours—and put in one that might not. Sign right here on the dotted line. You understand the risks. There are no guarantees. And here, permission to participate in a study involving the polypropylene sutures. And here, permission to participate in a study involving the homograft. What’s that, you ask? A patch of freeze-dried tissue from a pig’s heart. And here. And here. And again, here.”
Walking suddenly has a whole new appeal. Still I take the pen.
Chloe finally undergoes open-heart surgery when she is 9 days old. She is the smallest infant ever to have heart surgery in Boston, perhaps anywhere. Prematurity is associated with a high mortality rate, but then so is waiting. She has made the medical journals. Her heart is no bigger than a walnut.
I have an ultrasound picture of Chloe s little hand outstretched, waving at me from the womb. Would I have terminated the pregnancy if the defect had been detected? I don’t know. Will I, if my next child has it? You bet. Every day that we remain here, I ask myself, How much is too much to put a baby through? On really bad days, I ask myself, How much is too much to put a parent through?
I hate the headlines I see, now that I cannot miss them. For Newborn, a New Heart. Miracle Baby Recovering from First Heart Procedure. I hate that George Clooney doesn’t know what he’s saying when on “ER” he diagnoses a baby with hypoplastic left heart syndrome and tells the anxious new parents—also actors—why their baby is blue and can’t breathe. I hate that Baby Fae—the baboon-heart recipient who lived 20 days—had the same syndrome. I hate that when I hear of someone else’s child who has taken a turn for the worse, my first thought is, Better yours than mine.
CARDIOPULMONARY RESUSCITATION RECORD
CPR Flow Sheet
Time Patient Problem Interventions Patient Outcome
10:15 bradycardia Pavlon .3cc
10:20 bradycardia Atropine .15cc BP stable, sats 40s
10:25 bradycardia Atropine .15cc HR up briefly,
decreasing then down
10:36 Heart rate 60, compressions +pulses
decreasing started BP stable
10:37 Heart rate Epi 1cc BP stable
10:38 Heart rate 40 Epi 1cc BP stable
10:44 asystolic tube placement HR 144, normal
checked— sinus rhythm,
reintubated sat 93%
10:55 chest x-ray HR171, sat 71%
While Chloe continues to require the expertise of the staff in the cardiac intensive care unit after her surgery, I sleep on a noisy, plastic-covered mattress in the parents’ dorm. There are 12 cots here, each separated by a curtain. The doctors want us to be close. Sometimes situations arise that require parental consent, and decisions need to be made quickly.
All day I watch the monitors. I pump and freeze my breast milk. I listen to the stories of other families, families from New England, families from the South, families from the Philippines, families from Guatemala, families from Germany. All of our children have very bad hearts. Some of our children are dying. I try not to compare. I try not to feel jealous when their children have good days. I try not to gloat when mine does. But I am, and I do. Deep down I am, I do.
Sometimes I dream that I have the same scars my daughter has; I look down at my chest, and there is the thick, purple line running from my throat down my sternum. There are two X’s under my rib cage where the chest tubes were. Little pockmarks from the pacer wires. I used to dream about normal things like being unprepared for an exam, being naked in public. Now I dream, about four-chambered hearts and a steady rhythmic beat. Beat. Beat.
Mostly I wait. I wait and see. Will my baby live through surgery? Will she come off the bypass machine? Will being cooled to a temperature of 64 degrees Fahrenheit affect her development? Will they be able to wean her from the ventilator? Will she come home? Will she make it through a second surgery, then a third? Will she ever have a normal life? Will I ever have a normal life?
Tell me, will she live?
We don’t know, the doctors say. It’s too early yet. We’ll have to wait. Wait and see.
Chloe may very likely need a transplant later in life. No one knows how long the right ventricle can work, pumping blood to both the lungs and the body. The oldest kids who have had the three surgeries, as well as those who have had infant heart transplants, are just now reaching adolescence. These children often need pacemakers; Chloe has one, implanted in her abdomen. They are at risk for ventricular failure and fatal arrhythmias. Transplant recipients are at risk for rejection, infection, coronary artery disease and cancer from the immunosuppressant drugs.
When all of this was happening to the people next door and not to me, I used to theorize about natural selection: Aren’t birth defects just one way of controlling the population? You know—Darwin, natural selection, survival of the fittest? I was never an organ donor. Now I carry an organ donor card in my wallet. There is a small red sticker on my license. There is a miniature version of my living will. I don’t want there to be any doubt: Take my entire body, use it for science or dole out its parts to whoever needs them. Give away what I cannot give to my daughter.
I used to oppose research that involved animals. I gasped at the photos of rabbits blinded by cologne. I bought shampoo only if I could find the words “This product has not been tested on animals” on the label. But Chloe would not be alive if it weren’t for the sacrifice of some dogs, pigs, goats and sheep. Her continued health depends on it. I look into the eyes of the parents at Boston Children’s Hospital I look into the eyes of the children. What I see there is more powerful, more tragic, more fearful than what I find in any photo. I love my dog, but do it.
Most people, fear the knife, if it crosses their minds. I think about the knife all the time. I fear it. But I love it more.
CHILDREN’S HOSPITAL COURSE
Chloe had a stage I repair done for hypoplastic left heart on 2/7/94. Following her initial postoperative course in the cardiac ICU at Children’s Hospital, she was extubated by 2/16 and on 2/22 was transferred to the floor. During her hospitalization over the past 5 weeks, Chloe’s cardiac status has been relatively stable, with the exception of a cardiorespiratory arrest.
Stable 2-month-old, former 33-week infant, S/P stage I repair for hypo-plastic left heart. She is being discharged home with her mother.
Chloe’s mother is Jennifer White; she is a single mother. Jennifer has been extremely involved in Chloe’s care throughout her hospitalization. Jennifer is well updated in all of Chloe’s problems, understands how to administer Chloe’s medications, operate the feeding pump as well as to pass a nasogastric tube. She has had CPR training and is very knowledgeable about Chloe’s cardiac defect. Jennifer has been proactive in accessing the appropriate resources available.
Excellent beginning parent/infant interaction.
After nine weeks in the hospital, Chloe comes home. She has a visiting nurse. We travel to see her pediatric cardiologist once a week. Developmental experts stop by to check on her. I give her a plethora of heart medications every day. I bone up on my CPR. I spend hours researching her defect. I feed her with a tube that goes in through her nose and then down into her stomach; she can’t spare the calories she’d burn if she had to suck on a bottle like a normal baby. She wouldn’t come close to sustaining herself.
I do laundry and more laundry—she vomits with the slightest little cough.
I memorize the shape of her eyes and their deep blue color. I memorize the shape of her mouth and her little fingers, wiggling like the legs of a starfish, her lips and nailbeds tinged by a blue not unlike the blue of her eyes. I commit to memory the way she throws her whole body into a stretch, the way she kicks her legs, so pleased that they work, so pleased to see me. I cry.
I remember the day we finally leave the hospital. I feel like a criminal with a life sentence who is being released from prison by mistake and who knows it. I sign the discharge forms and expect someone to catch on. “And where do you think you’re going, little lady?” I say nothing, play it cool. I just nod when I am given the instructions for dental procedures. It’s so far in the future; she doesn’t even have teeth yet. I understand that Chloe will need prophylactic antibiotics to prevent endocarditis. I understand that germs from her mouth could enter her blood stream if there is any bleeding during a dental cleaning. I understand that these germs could go right to her heart. I nod, too, when the nurse reviews the list of signs and symptoms of congestive heart failure in infancy:
- Feeds slowly and tires easily.
- Does not awaken to feed.
- Eats less and takes longer to feed.
- Works harder to breathe with feedings: breathing faster and with more
effort, nasal flaring, grunting, coughing or wheezing.
- Continued vomiting.
- Poor weight gain.
- Cool arms and legs.
- Pale or mottled arms and legs.
- Cyanosis: blue lips or nailbeds.
- Fluid retention: puffiness or swelling around the eyes, hands and feet.
- Fewer wet diapers than is usual.
- Excessive weight gain.
Jeez, Louise, Chloe already has eight of them. We’re sprung, nevertheless. My first instinct once the doors have closed behind us is to break into a sprint. I don’t. I just walk very quickly. My parents and sister are waiting for us at home. “You’re not supposed to be here yet,” my father says. “I called the hospital right after you left. How fast did you drive, anyway?” But he doesn’t push it and helps me off with my coat. He must see the past nine weeks flash for an instant in the black of my eyes.
When I first found out that Chloe was sick, I made a series of silent pleas and promises: If only she lives long enough for me to see her smile, I’ll be happy. If only she lives long enough to go home.
She keeps meeting the milestones. I keep getting greedier.
It comes down to this: I am on a desperate quest for some all-powerful being with whom to play “Let’s Make a Deal.” Let her live, and whatever I have, whatever I will have, is yours.
No one comes.
I am awaiting the arrival of a modern-day Rumpelstiltskin to grant me one wish, that my baby will survive. Forget weaving straw into gold; make that left ventricle grow. In return I will give you anything.