For many expectant parents, a trip to the doctor is exciting. For this couple, it was the beginning of a nightmare. This is the true story of the ‘miracle baby’ on all those Washoe Med commercials.
A year ago this week, my wife and I received devastating news.
In her upscale Caughlin Ranch office, the obstetrician moved toward the beating image of our new baby. There were wiggling limbs, all the organs. We didn’t want to know the gender. “I’m glad you’re here,” she said to our midwife, “because there’s a problem with the brain.”
My wife, Leilani, sucked in her breath and coiled away from the nightmare, a recurring nightmare, it seemed to us. She wondered why the doctor announced her find to the midwife and not directly to her, the “patient,” as pregnant women are termed. Maybe it was a case of one medical professional wanting to speak to another.
The obstetrician did talk to my wife shortly, in part through the medium of textbook pages. She photocopied several pages, which I still have. The technical descriptions offered two grim possibilities on the origin of the condition: a rare viral infection called CMV (citomegalovirus) or a congenital defect. Whichever it was, both had similar likely outcomes.
The doctor described one scenario: a vegetative teen on a feeding tube. She presented death as a worst-case scenario.
In the days that followed, I came to believe she had it backward. Death would be a best-case scenario. A helpless child—a life that is not a life—would be the worst possible situation. I sensed my own selfishness, my defects as a caretaker.
It’s interesting to look over the textbook pages a year later. What sticks out is a third, more likely possibility that my wife didn’t hear: “borderline” or “mild” enlargement of a lateral brain ventricle, a condition inexplicably more frequent in males than females. My wife couldn’t look at the pages. It was impossible. She was living out a dream worse than her last pregnancy, which ended in miscarriage.
Our midwife (we had planned on a home birth, plans that were quickly scrapped) also listened to what the doctor said, and it sounded grim. She seemed to be saying, unequivocally, that our baby had little brain to speak of.
“Is there any chance you’re wrong?” my wife asked. In 20 years, came the answer, the doctor had never seen such a pronounced case. She emphasized the possibility of CMV, a virus that destroys the fetal brain.
It was my wife’s first visit to this doctor. Up to that point, our low-tech midwife, who had seen us through the previous miscarriage and whom we trusted absolutely, was our primary caretaker.
The day before Thanksgiving we went to see the pediatrician who cares for our healthy, normal daughter, just turned 3. Dr. Matthew looked at the black-and-white images I handed him and said he couldn’t decipher them. I showed him the textbook pages and recited the grim facts I had researched on the Internet. My wife and I asked him about the possibility of abortion, a question neither of us ever thought we would ask.
Like most Americans, we are pro-choice and anti-abortion. Having experienced the in-utero death of a fetus, our baby, and based simply on the principles we share, we were in fact “pro-life,” though not in the distorted partisan sense of the term. We wanted life, family, happiness. I never desired normalcy until then.
Dr. Matthew sidestepped the question. He said, in his Indian accent, “Kiddies do not read textbooks.” I was stunned. It seemed like a necessary bit of humor. More important, he was telling us not to abide by textbooks and statistics. He was no mystic. He’d seen emerging technologies aid or cure infants of a multitude of once-deadly conditions.
On the car ride home, I couldn’t accept his hopefulness. I view this now as my personal failing. I was trying to be realistic. CMV drew no quarter. A congenital brain defect was an insidious killer. I wasn’t about to live my life—or allow my wife to live hers—like we were in some made-for-TV movie in which a brave parent toils through a squalid existence only to be rewarded in the final act when the adult child blinks out “I love you” and draws a final breath. It sounds like awful melodrama unless you’re living it or believe you’re living it.
No, I didn’t have what it took—whatever “it” was. Fortitude. Selflessness. The capacity to love unconditionally. I discovered I was a weak man.
The terrible fact was that the baby—we still didn’t know the gender—had become alien to me. The seemingly irrefutable diagnosis had transformed the fetus into a thing instead of a child. In her darkest moment, during one of those long nights, my wife, normally so upbeat, whispered to the baby in her womb. She told the child it was time for it to go away, wanting an easy answer to the possibility of carrying a brainless fetus to term.
A year and a half before this, I wandered through St. Mary’s maternity ward, dazed. I don’t think tears were streaming down my face. I said to the nurse, “It’s done,” or something like that. Cradled in my arms, wrapped in a white towel, was the dead fetus of a boy we’d decided to name John, a name I would never choose for a living baby of mine.
They had tucked us away at the end of the hall, away from the happy mothers. Our midwife sat in the sterile room with us and oversaw the final contractions. In Nevada, it’s illegal for midwifes to deliver children in the hospital, but this wasn’t exactly “birth,” was it?
Diane had been unable to detect a heartbeat a few days prior, and we all had driven to the emergency room to confirm the bad news. Nature had its way of taking care of these things, everyone seemed to be telling us. The miscarriage occurred well into the second trimester, not a normal situation, I thought. A doctor friend of mine assured me in a cold doctor’s tone that it was fairly common. He didn’t have kids.
Yes, I wanted to respond, death is common. Whether it occurred at 80 or in utero, it was still death—to me, at least. Few people honored my grief. Carl, the pastor at Good Shepherd Lutheran, did honor my grief, but I ended up feeling bitter anyway when, out of a good heart, he shared the news with the congregation. I was somehow embarrassed, as if miscarriage were a modern version of the scarlet “A.”
The doctor and nurse rushed into the room at St. Mary’s when there was nothing left to do. The doctor turned to my wife and said, “You can start trying again in six weeks.” What the hell? I wondered. “Trying” was the last thing on our minds. I held him up with my questions. I wanted a postmortem exam. Since we had an “uneventful” pregnancy the first time, I wanted to know what had gone wrong.
Like a teacher assuring a particularly dull child that “some things are not meant for us to comprehend,” both the doctor and the nurse insisted that an autopsy would be a waste of time and money. In the moment of loss, I didn’t act with decisiveness or strength. I allowed them to persuade me against my own judgment.
I ceded my curiosity to the dark notion of Mystery. Underlying this notion, of course, is the concept that humans cannot comprehend God’s will and must live blindly by faith. When I reflect on the past year, I feel a deep conviction that curiosity itself must be a reflection of divinity. Our desire to know and understand, whether it comes from nature or from God, is a uniquely human inspiration.
My own sense of religiosity is, at best, like tracking a subatomic particle—by the time you predict where it is, it’s no longer there. Faith has never been my strong suit. Hubris is just one of my sins, and the idea of a child lacking intelligence is more frightening to me than a child’s fetal death. For all my unfeeling intellect, I believed from the beginning that I lost my first son, not just a fetus, on that day at St. Mary’s.
As it turned out, having an autopsy with the appropriate blood tests could have saved us from our future nightmare. We might have been able to prevent what happened during the third pregnancy: an in-utero stroke. Clotting blood probably furthered the complications. Babies are amazingly resilient, however. (They don’t read textbooks.) Toddlers have rubber bones that won’t break, and infants have “plastic” brains that can’t be thwarted.
Hope formed slowly and uncertainly. I had an old man’s brain, after all, unaccustomed to the miracle of life. Death is a certainty, life only a possibility. I’ve always known, as if by instinct, that wisdom is more important than intelligence, and that information is not the same as knowledge. Even while my selfishness was being exposed and tested, the events of the past year reaffirmed a wiser aspect of myself.
Medical factoids shelled us, baffled us, reassured us. At some point, we were informed we would have a baby girl. As Leilani’s blood pressure rose, she was assigned a hospital bed. She’d experienced mild symptoms of pre-eclampsia (pregnancy-induced hypertension) during the first pregnancy. Under normal circumstances she would have been told to stay in bed at home. Being stuck in the hospital at Christmastime was particularly miserable.
To top it all off, our baby looked to be coming four weeks early. The child would be whisked away to the critical-care nursery the moment after birth. In short, things were—once again—grim.
Yet the situation was hopeful compared to where we’d been a month before.
A friend of mine named Jeff Blake is an emergency room pediatrician at Children’s Hospital in Washington, D.C. Upon hearing everything I had to say, he asked, “CMV? Are you sure?” He doubted that such a rare virus was the cause of the problem. I’d forced a quick appointment with the perinatologist recommended to us by Michael Pokroy, another family friend and neonatologist who used to live in Reno and still occasionally filled in at the local hospitals.
When Leilani and I met with Earle Oki the week after our nightmare Thanksgiving, he and his staff seemed a little confused as to why we thought we faced an emergency. We told him we hoped for the best but wanted to prepare for the worst. Calmly, he explained that abortion after 24 weeks (out of 40) was illegal in Nevada. He said there were cash-up-front clinics in California. I even thought of flying to Canada.
Recently, the Bush administration had pushed legislation through Congress banning so-called “partial-birth” abortions, and even though several federal judges declared the law unconstitutional because it didn’t contain an exception to protect the health of the mother, that was little comfort.
My wife faced a real possibility of carrying a fetus with profound brain defects to term. Isn’t it more humane to terminate a pregnancy under certain dire circumstances?
Morality is a private affair and can’t be legislated. Legislators ought to respect the gut-wrenching life and death decisions that families must sometimes make.
Oki set us down in the darkened room and toyed with knobs on the machine. He squirted cold gel onto my wife’s belly and swirled the hand-held device until he found an image on the monitor. “Oh, I almost forgot,” he said. “Do you want to know the gender of the baby?”
My wife and I glanced at each other. Again, I found it difficult to buy into this seeming optimism.
He hummed and harrumphed for 45 agonizing minutes. Finally, he flicked on the lights, and we squinted as if coming out of the theater.
“OK,” he said, “I’ll meet you in my office in a few minutes.”
We sat in front of the desk. He opened a medical book. Now I knew we were living out the obligatory bad-news sequence of the TV movie-of-the-week. I placed an arm around my wife, stared bravely past the camera that wasn’t there. I felt like an actor who didn’t know his lines.
He rated it a mild to moderate case of an enlarged ventricle. Ventricles allow brain fluid to drain into the spinal column. One may have collapsed for an unknown reason, causing the ventricle or the brain to swell with fluid. There were various postpartum treatments. We couldn’t know for certain if there was significant brain damage or how severe or extensive any damage might be.
Some people call it gambling. Others call it faith. I didn’t call it either. If there was a chance we would have a healthy child, we would take that chance.
The circumstance was best summed up, most pointedly and most harshly by our neonatologist friend, Michael Pokroy. It so happened that when our baby was born, he was filling in for a colleague as part of the team of doctors who treated our baby at Washoe Medical Center. “You can’t know,” he enunciated in his lilting South African accent. “Your child could turn out to be the next Beethoven or the village idiot.”
I don’t want him to be president, I thought. I don’t know if Michael would have said something so direct to another set of parents, but he was giving us the kind of honesty we wanted. Neither my wife nor I was taken aback. By that point, words could hardly stun us. Medical realities were the only concern.
On Christmas Eve, two days after the birth, the pediatric neurologist came to us with the results of the first MRI scan. Nothing was certain. The larger picture was coming clear too: Nothing in life is certain. She said that she had seen adults with master’s degrees who had extensive brain damage revealed only late in life due to new technology. If she had seen such damage when the patient was a child, she would have predicted severe stunting of cognitive development. By comparison, our baby had hardly any damage. The damage that did show on the rear left tip of the brain might affect the baby severely or not at all.
“Will our baby walk?” was all my wife wanted to know.
The doctor, Mindy Schwartz, wrinkled her small forehead. “I would expect so,” she said. “I mean, there’s no reason to look for problems. Treat the baby as you’d treat any baby. Expect normal development and keep an eye out.”
Had my wife not been so loopy on the magnesium drip ordered for her recovery, she would have sprung to hug the woman. I grilled her about that all-important cognitive development, and she reassured me not to expect problems but to be aware. “Like with any kid,” I finally concluded. She nodded.
As she left the room, I wrapped myself in a blanket. The magnesium made my wife boil from the inside, so air-conditioning blasted us on Christmas Eve. Despite the chill, I had a warmer sense of the world. Everything had come together to protect my newborn.
Our baby was hardly through with doctors, though.
When you witness the birth of a child, you understand where Hollywood aliens come from. There is no entity more alien than a newborn human. He comes, quite simply, from another universe, from another galaxy at least—from a place of darkness and mystery into the known world of light.The nurse, or the doctor—hell, I don’t know, someone said, “It’s a boy.” I was still too terrified to process the fact that the world’s best medical resources incorrectly predicted the baby’s gender. Leilani and I had stayed up the entire night batting about names. After going through hundreds of possibilities, we sort of decided on Lucinda, but as soon as we realized it was a boy, we knew he was Gabriel.
I cut the cord, as I’d done with our daughter. The situation was completely different.
When Gabriel began to crown, I saw his tiny pate crumple like a ball of paper. I thought I was OK, but seeing the skull collapse (this is normal, by the way) brought back all the terror of a brainless fetus, so I wasn’t myself when I cut the cord. I oversaw the Apgar test—he scored high; this was good—and I followed the nurse to the critical-care nursery.
In incubators, the other aliens resided. Here, a parent could discard any dregs of self-pity. A girl born at 1 pound—that’s not a typo—sprawled on a wee vibrating platform. These are the children that medical ethicists wring their hands over, but many kids born at 24 weeks grow up strong and healthy nowadays. The cost of this health care is an issue I cannot deal with properly in this article. As I said to Leilani, “Think of all the airline miles. We’ll go to Fiji.”
Without insurance, we would have lost our house or our child. Even with insurance, we faced $15,000 of debt (our bills mounted to over $100,000). In reality, we won’t be able to fund a vacation for years to come. It’s sobering to realize that we are lucky. Millions of Americans like us dance on the edge of financial ruin with part-time employment and no insurance.
Gabriel weighed a whopping 4 pounds, 6 ounces. He breathed on his own. He looked exactly as his sister had, only smaller. I put my hand on the clear plastic of the incubator. The nurse explained how they would insert a feeding tube through his nostril.
“When can he go home?”
He had to eat at least an ounce at a sitting all by himself.
“Not long,” she said. “Probably two or three weeks.”
It sounded like a lifetime. The nurses have a different perspective, sometimes caring for an infant for six months.
More than anything, more than pouring iron-enhanced mother’s milk into a tube and injecting it through my son’s nose, more than the neglected child whose mother never visited, my wife and I remember scrubbing our hands and forearms. Every visit, usually for us three times a day, you gave yourself a surgical scrubdown. I thought I would have no fingerprints left before my boy came home.
All the nurses and doctors were kind. We intended all along to write the nurses a thank-you card, but we were just so frigging glad to get the hell out of there, we never did.
My wife looks into a gargantuan camera on rollers and says, “He’s our miracle baby.” This, too, is an alien environment, dozens of people scurrying about, a world-class photographer, marketing VPs in upholstered chairs, the creative director throwing out ideas for dialogue.Leilani agreed to do the ad campaign for Washoe Medical Center as a sign of appreciation, but I’m at the sidelines scheming how I can negotiate my boy’s cuteness for a reduction in medical bills. In the end, I sign the waiver—my family’s star power free of charge.
Despite the evidence of this article, I’m by nature a private person. Plumbing the depths of personal consciousness, especially in public, is antithetical to my being.
Leilani is more forthcoming. Once my wife’s words aired on so many channels over the Truckee Meadows, I understood that everyone would know my boy might have brain damage. Something “wrong” with him. A matter of shame. I’m still unsteady, this minute.
Last April, Gabriel’s hydrocephalus made the veins on his cranium swell. His eyes rolled back into his head. He is beautiful, but the condition was ugly. The ventricle hadn’t reopened. Excess fluid in his brain was putting pressure on his optic nerve. His vision is coming along now, but we don’t know what awaits in the long run.
Not long ago, our baby would have suffered a long, slow decline toward death. Now, about 75,000 surgeries are done each year to install shunts that drain the fluid. Basically, it’s a siphon placed through the cranium. Any excess pressure causes drainage through a tube into the stomach cavity. The tube will stay in him his entire life. He won’t be able to play football. I was disappointed for two seconds that he wouldn’t be able to wrestle.
The surgeon who took on Gabriel, Michael Edwards, is one of America’s best. He spends a few days per month in Reno. Writing about it like this, it all sounds routine.
It’s brain surgery. It’s your baby.
Since the initial diagnosis, I had a feeling of alienation from my boy. It persisted through the surgery. It’s a typical defense mechanism. The worst could happen. If I wasn’t emotionally connected to the child and something went wrong in surgery, then the pain wouldn’t be so great. The unconscious will to protect myself created a barrier between me and my son that was never there with my daughter. I loved her unconditionally the moment she was born when she recognized my voice. Did I love her only because she seemed an avatar of perfection? My boy recovered in a day from his surgery, but I didn’t recover from the emotional dissection for six months.
Despite the independent prognoses of three doctors, I was sleepless with worry about developmental delays. Why isn’t he reciting Shakespeare yet? Why hasn’t he learned to ride a bicycle? I don’t care he’s only 7 months old. I want results. He’d done nothing wrong and didn’t deserve a father who treated him like an alien.
Finally, in October, Gabriel and I were alone in the house. I pulled out a squeaking crow puppet that caws and pecks. For the first time, this somber, patient child giggled for his impatient father. He laughed. He cooed.
And it’s strange to say, since that moment I don’t care so much about "progress"—I just feel that he’s my son, and I can love him now, defend him, sacrifice for him, kill for him and die for him. Even, for him, write about it.