Breathing For Zeke
"That's my son. That's Ezekiel Harig."
As those words are spoken, the caravan of technicians hurrying a baby into the Neonatal Intensive Care Unit at Children's Hospital Medical Center of Akron comes to a halt. Joe Harig peers through the bundle of tubes that wind inside the clear plastic Isolette.
His bloodshot eyes widen as they focus on a baby the size and color of a midsized fillet of salmon. Harig, 36, will later joke that his son is shorter than a stadium hot dog.
The caravan hurries on and the steel gray doors close behind it.
It is 6 p.m. on Feb. 24. Ezekiel "Zeke" Harig has been alive for a little over an hour. Had he made it to full term, 36 to 40 weeks of gestation, Zeke would have been born around June 10.
Zeke was born at 24 weeks, weighing 700 grams, or 1 pound, 9 ounces. He is 11 inches long. His chances of survival are between 40 percent and 65 percent. Right now, he is alive only because a ventilator is breathing for him, pumping vital oxygen into his unformed lungs.
Just 10 years ago, Zeke probably would have died shortly after birth. Then, doctors were unable to save babies who were born under 26 weeks and weighed less than 800 grams. But new technologies now allow doctors to save babies as young as 23 weeks, who weigh as little as 500 to 600 grams. For instance, 45 percent of 23-weekers admitted to the Neonatal Intensive Care Unit at Children's Hospital survive to go home. For 24-weekers, the rate increases to 70 percent.
Zeke is large enough and old enough to be on the cusp of what is technologically possible. But in the next few months, the Angel of Death will hover at his bedside numerous times. His immature lungs will give out regularly; he will need surgery; and he will be on steroids longer than almost any other baby at Children's.
Even if he lives, he could fall among the one-third of 24-weekers who survive with a major handicap. The next few months will reveal whether blood has leaked into Zeke's brain causing damage, whether his vision has been affected, and whether his heart is healthy and the right size.
Every year in America, about 15,000 to 20,000 premature babies are born weighing from 500 to 999 grams, stirring a national debate about the ethics and financial cost of saving babies at ever-younger gestational ages. Zeke's medical bills, for example, will run as high as $320,000. With many of these preemies ending up severely handicapped, the debate becomes more complicated: What quality of life are we saving these babies for?
Joe and Cassandra Harig are deeply religious and wanted their baby saved if he had a shot at life. The Harigs learned a few weeks before Zeke's birth that they probably would have a very premature baby. Cass, a diabetic, had a weak cervix.
The Harigs were also reassured by the promise neonatologist Dr. Thomas Lin made them -- that he would make the same medical decisions for them that he would for a member of his own family.
Lin was present as Zeke was delivered by Caesarean section at Akron City Hospital. Seconds after the birth, he ran down the list of questions doctors must ask in deciding if a baby can be saved: Is the newborn attempting to breathe? Is he vigorous? Did his heart rate and blood pressure improve after he received a few breaths?
Lin decided Zeke had a reasonable chance of survival. Whisking the infant away to an adjoining room, he worked calmly but quickly to hook Zeke to a ventilator, and to insert a breathing tube into his mouth and a feeding tube into his nose. Lin also poured artificial surfactant down Zeke's breathing tube to keep the air sacs in the lungs open. In utero, fetuses start to produce surfactant between 35 and 40 weeks. Babies born earlier cannot produce the vital chemical.
Eventually, Joe is allowed in to visit his son. The first sight is not pretty. Every part of the infant's body seems to have tubes coming out of it. The thick breathing tube forces his mouth open, so that he resembles Edvard Munch's The Scream, a living symbol of suffering. Zeke fights sleep and squirms constantly, wriggling his wrinkled, old-man hands.
An overhead warmer and plastic cover help him retain body heat. Because his unformed skin lacks the protective layers of fat and because his body is mostly water, it is easy for him to lose heat. An oversized green-and-white cap, knitted by hospital volunteers, covers his tiny head.
But despite the fact that Zeke's red skin is the color of raw fish, despite the surreally small scale, despite the fact that his eyes are fused and skin is wrinkled, this is a perfectly formed baby, down to his paper-thin fingers and tiny toes. This is human beauty made shimmeringly fragile because of his condensed size.
A nurse introduces Joe to his son and tells him that Zeke can probably hear him even though he can't see him. Joe appears befuddled; he hasn't eaten all day and hasn't slept in almost 36 hours.
"If this kid's gonna make it, it will be from the strength of God," Joe says. Strength of God, after all, is the meaning of Ezekiel, and why the Harigs chose the name for their son.
At this moment, on the first day of a four-month roller coaster ride that would take the Harigs from the dark valley of despair to the shimmering promise of the mountaintop, Joe Harig has no idea how much God is going to test his own strength.
"You love me, right?"
"I love you."
"How many ways you gonna kill me?"
"All at once. A hundred ways."
"Shall we dance?"
"Don't make me laugh, you bonehead."
It is 2 p.m. the next day. Joe Harig has left their older son, 14-month-old Noah, with a relative. Now he is trying to help Cass leave Akron City Hospital to go see Zeke for the first time. Cass, 32, is in terrible pain from the surgery. Getting out of bed or walking a few steps makes her grimace. But when Joe gently asks her if she is up to this, she lets out a loud, decisive "Yes!"
Cass is not prepared for her first look at Zeke. "He's so small," she cries. She opens one of the six round doors to the Isolette and touches him for the first time.
"Aw, this is wonderful. Oh, he grabbed my finger. Oh, you know mommy don't you? You little bundle of bones. Such long arms. I got baby dolls bigger than my son. Couldn't wait a little longer, could you, baby?"
A teary Cass turns to her husband.
"Joe, you don't know how comforting it is to feel his feet in the palm of my hand. It's perfect."
Cass notices that Zeke's skin is almost transparent. A network of veins is visible on his stomach and chest, like the veins on a leaf. Even the most delicate nurse will pull out some of his skin whenever she pulls out a piece of tape.
Joe marvels that Zeke has hair. Nurse Laurie Fortune urges Joe to talk to Zeke: "He knows your voice. He knows you are Dad."
Neonatologist Jeff Butler stops by to paint a realistic picture of what the Harigs could be facing: Zeke may have brain bleeds that could lead to mental retardation or cerebral palsy; he could catch infection easily because of his thin skin; he may be blind or severely nearsighted because he is on oxygen and because of his premature birth.
Finally, Butler uses the two words the Harigs will hear over and over again in the next few months: roller coaster. Bad days will follow good days; fearful dips will follow hopeful soars. The Harigs also are told about the Honeymoon Period, the first 48 hours when most preemies do well. The problems usually come later.
Zeke, for instance, is on only 22 percent oxygen right now, which is close to the 21 percent that healthy people breathe.
The Harigs will hear all these cautionary tales, will nod and then continue to do the only thing they can, the only thing they must -- live in the moment.
On the third day of Zeke's life, the honeymoon is starting to wane but the Harigs remain optimistic.
Sure, there is the jaundice. Zeke's immature liver is not breaking down the bilirubin in his blood.
Sure, Zeke has lost weight, down to 1 pound, 7 ounces.
Sure, Zeke's oxygen saturation level dropped for no apparent reason. That means the oxygen content in his blood is dropping.
Sure, his oxygen intake has crept up to 30 percent.
Sure, an echocardiogram reveals that Zeke has patent ductus arteriosus, an opening in the heart that usually closes at birth. In preemies it doesn't and the hole must be closed using medicine or surgery.
Sure, Zeke's first stuffed animal -- a gray elephant -- is bigger and weighs almost as much as he does.
But . . . but. . . he is still alive.
That lone fact is the bewitching siren call that whispers to the Harigs, blocking out all the cautions of the serious-faced men and women of medicine.
Thus, parental hope surges and beats against the rock of real-life despair. Already, the human impulse toward bonding, toward projecting personality on a son whose eyes are still fused like a kitten's, has begun.
"Like Noah, Zeke is a fighter," Cass says.
"I'm moods, he's attitudes," Joe says about his new son.
On the way back from Children's to Akron City Hospital, the Harigs are cheerful.
"I definitely feel better. There's a great deal of inner peace right now," Cass says. "And guarded optimism. No matter what happens, I have this time with him."
Joe interrupts her negative thinking. "I tell you what, not a chance. He's gonna make it. The first 12 hours I was leery. But now . . ."
"Joe's not usually an optimist. But seeing him like this makes me so hopeful."
The hope crashes and the honeymoon ends on March 3, a bleak, snowy, Akron day.
Despite all the warnings, the Harigs aren't prepared for the crash. Cass has been out of the hospital for only a day, her stay having been prolonged by an infection that caused a high fever and shakes.
Zeke has been switched to a new ventilator called the Oscillator, which minimizes lung damage. The Oscillator, which rapidly pumps air into his lungs at the rate of 900 breaths a minute, makes Zeke jiggle like a bowl of Jell-O.
The news is grim. Zeke has developed a lung infection, most likely pneumonia. The infection interferes with his oxygen saturation level, which is his ability to absorb oxygen into his blood. His oxygen requirements have shot up to 100 percent.
At 10 a.m., his oxygen saturation level is 88; it needs to be above 90. Cass sits quietly, the palm of her hand resting against Zeke's feet. Her lips move silently in prayer. Joe stands by her side, his face a map of quiet intensity.
By 10:11 the room is very quiet, the mood grim. Joe, shoulders hunched, puts his arm around Cass. They are both crying. The monitor showing the infant's oxygen saturation level drops by the minute. . . 84 . . .83. The tension is unbearable. Joe and Cass have to leave the room. A nurse takes them to a nearby family room.
Zeke's saturation level drops to 76. To make him comfortable, nurse Deanne Johnston picks up his head and adjusts the pillow, untangling the cobweb of tubes. No use. The saturation level dips to a nerve-wracking 60. Nurse practitioner Karen Robinson eyes the monitor, one leg shaking nervously.
At 10:40, Joe's brother Kevin and his wife, Vicki, come to visit their nephew for the first time. They all move into the family room.
"Kevin, I wasn't ready for this," Cass says. "I'm his mom. I gotta be able to do something for him. Poor Joe, he's being such a saint."
The Harigs begin to second-guess themselves, each wondering if they unwittingly gave their son an infection.
"I don't know anything about this. I don't want to know. I just want to know when he's ready to go home," Cass finally says.
"But we now have the sickest child on the floor," Joe blurts out.
The admission is followed by a stunned silence.
The Harigs discuss how the crisis is affecting Noah, their 14-month-old. He is being clingy, doesn't want to let Joe out of his sight.
Finally, a nurse pokes her head into the room. Zeke's oxygen saturation level has climbed up to 94. His carbon dioxide levels, which were too high, have dropped down to an acceptable 46.
Joe lets out a whoop. "Can I kiss your foot?"
That afternoon, more good news. Dr. Anand Kantak, head of the NICU, tells the Harigs that an ultrasound showed no blood leaks in Zeke's brain. "His brain is fine. So far, the problem is restricted to his lungs."
Tomorrow, Kantak says, Zeke will start on the steroid Decadron to reduce lung inflammation. He will also receive another blood transfusion -- less than half an ounce of blood given from an apparatus that looks like a test tube.
The Harigs decide that their son must be baptized this day. There is a frantic rush to contact the Rev. Paul Rosing, pastor of Anunciation Church in Akron. Hours later, with Kantak, a Hindu, and Sue Monsell, the hospital's director of support services, standing in for the godparents, Rosing baptizes the infant.
After the baptism, Kantak looks worried. Every time there's an infection, it sets the baby back by about two weeks.
The next day, nurse Sally Armstrong is also worried. The high levels on the ventilator will damage Zeke's lungs. And using steroids this early is not good. Usually, babies don't need the first course until they are about 20 or 30 days old.
"He's very sick right now," Armstrong whispers. "He's the sickest baby in the unit right now, by far."
Still, there's some good news. "The hole in the heart is closed," someone announces. The medicine worked. Zeke won't need surgery for that.
Joe and Cass stand on either side of the sleeping son and sing Happy Birthday to him ever so softly.
Ezekiel James Harig is eight days old.
The NICU at Children's is a technologically advanced place filled with bright, scientific-minded medical professionals. But everything they do to care for very premature babies has a shadow side. Everything.
The ventilator that is keeping Zeke alive is also scarring his lungs, causing a chronic condition called bronchopulmonary dysplasia (BPD).
The steroids that are treating his lungs may diminish his ability to fight another infection and may slow down his growth.
The oxygen that Zeke is getting to stay alive may damage his vision, may even cause blindness.
The invention of artificial surfactant, the creation of special ventilators for premature infants and the prenatal administration of steroids to the pregnant mother, have revolutionized the field of neonatal care.
But what is technologically possible is not necessarily ethically justifiable. Some question whether saving premature babies is the best use of society's limited medical dollars.
Brendan Minogue, who teaches bioethics at Northeastern Ohio Universities College of Medicine in Rootstown, points out that 42 million Americans do not have health insurance and lack access to a primary care physician -- and research shows that primary care produces the most bang for the buck.
"My opinion is that the highest priority should be primary care. NICU provides great benefits to a small number of people," says Minogue, who is also a professor of philosophy at Youngstown State University.
Kantak, head of the Neonatal Intensive Care Unit at Children's, counters that it is difficult to deny access to medical technology in a capitalist society that prizes individualism over social good.
"The answer is not (to deny services) after the research is done but before the research is undertaken. Decide ahead of time what's not in the interest of society. You cannot deprive anyone of technology once it exists."
Dr. Thomas Murray, director for the center for bioethics at the School of Medicine at Case Western Reserve University, is even more blunt: "If the (saved) money goes into the pockets of CEOs at HMOs, I'd rather see it go into valiant attempts to save infants."
Even Minogue allows that it is better to err in favor of saving a premature baby in the delivery room. As the extent of the baby's problems become clear in the weeks to come, parents and doctors can discuss the next course of action, he says.
Empowering parents -- and a corresponding sense of humility -- is common among the NICU staff. Indeed, watching the medical people at work is to be reminded of how much of an art medicine is.
You are reminded when you see the nurses adjust the ventilator settings to strike that magical balance between giving Zeke enough air pressure but not too much oxygen; or when they use blood pressure cuffs the size of Band-Aids; or when surgeon Dr. Robert Klein performs intricate bedside surgery to insert an intravenous central feeding line into a major blood vessel near Zeke's heart.
"This is the first time we've ever done this," Klein jokes.
"I'll take my baby now," Cass responds.
Zeke is nine days old on the day of the surgery. He weighs 1 pound, 13 ounces. Cass has just gotten to kiss him for the first time since he has been at Children's.
Cass is blessed with infinite patience; she is the calm center to Joe's stormy intensity. Over the next few months, the couple will be textbook examples of how to rise above adversity with courage, humor and a rock-solid religious faith.
But tonight, at home, Cass has a major emotional breakdown.
"When I get to touch him it's like the first time, every time," she sobs. "Because I may not get another chance. I've not bonded with him yet. I have, in the sense that he's my son. But holding him, feeling his breath on my shoulder -- we're not there yet. I have to be able to love him, even without access to him.
"I need someone to tell me it's going to be OK, and nobody can tell me that."
The nurses have a name for it: trying to peek into the future. Many of the parents do it. It's part of being on that roller coaster.
For the next two months, the roller coaster soars and dips precariously and soothingly:
March 20: Cass holds Zeke for the first time, for about 10 minutes. At first, she feels like she's holding only blankets. Then, he wriggles.
The next day, his oxygen saturation level drops again for almost eight hours. At first, they suspect a new bout of pneumonia. But it's just the BPD, the chronic lung disease. In any case, Zeke is back on the steroids.
The Harigs are slowly realizing that the BPD is severe enough that their son may not make it. "Everything else is functioning beautifully," Cass says. "But nothing will function if his lungs don't function."
That day, they give Dr. Butler specific directions about how far to go to keep Zeke alive. No extraordinary measures, they tell Butler. No shocks to his heart. We don't want our son to suffer unneccesarily.
Butler reassures them. "You have to understand," he says. "We've bonded to Zeke as you have. You can't care for a baby and not care for him as a person."
March 24: Zeke is a month old. He now has the official preemie-on-steroid look -- the Decadron makes his cheeks puff out like wings. It actually makes him look more like a normal baby. He weighs 2 pounds. His skin, too, is slowly losing its angry redness and settling into a normal pink.
March 30: Zeke has developed an inguinal hernia in his groin. It is a common problem in preemies, caused by the incomplete development of the abdominal wall. He will need surgery before being discharged but the hope is to delay it until he gains more weight. Right now, he is 2 pounds and 3 ounces.
The BPD flared up again, shooting his oxygen requirements up to 100 percent.
Joe held Zeke for the first time yesterday. At first, he was afraid to touch him but then he couldn't get enough. "My son, my son," he beamed.
April 3: A new complication. Zeke's potassium levels have shot up to twice what they should be. His kidneys are not functioning right. The left ventricle of his heart is also enlarged -- probably a side effect of the Decadron. Cass and Joe look drained, on the verge of collapse. Joe's daily commute to Columbus, where he works for the federal government, gives him too much time to think and worry.
Nobody knows why Zeke's lab numbers are so skewed. The decision is to sit tight and check his levels that evening. The evening check is reassuring. The levels are slowly approaching normal.
April 20: He's a baby. The thought hits with startling force because Zeke's eyes are open. He is wide awake, the beautiful, big, dark eyes following every movement in the room. He is now 2 pounds, 12 ounces. As Cass holds him, he cries silently, his eyes watering up, his face pinched and red. But no sound emerges because of his tubes. This tiny young being still, technically, belongs in the womb.
April 27: Just before 9 p.m. Zeke's right lung collapses because of the BPD. His oxygen level shoots up to 95 percent. Joe stays at the hospital all night. Cass finally leaves at 2 a.m. to pick Noah up from her mom's house.
The Harigs have taken to calling such incidents "Zeke attacks."
They are a profile in courage, a portrait in grace.
Burdened by mounting hospital bills, a seriously sick baby, another young child at home, Joe's brutal daily commute, his fears of being laid off, the Harigs still manage to laugh, cry, love.
Not once have they asked, "Why us?"
Not once have they questioned their ability to care for a child who may be handicapped. "It doesn't matter if he's disabled. It doesn't matter if he's blind. He's alive," Cass says.
They have visited their son daily, a fact much appreciated by Zeke's nurses. Some parents don't show up for weeks.
Although Joe has decent health insurance, there are many items it won't cover. Because of the BPD, the Harigs have decided to get central air and a new furnace put in before their son comes home. That's another $5,500 -- an amount that Joe's parents insisted on paying.
Indeed, the Harigs have been a dream team.
And yet . . .
At times, the months of sleepless nights, the constant pit in the stomach, the constant dry-mouthed fear, cause them to turn on each other with the quiet ferocity of young animals.
Some days, Cass will make a harmless joke and Joe, usually wisecracking and carefree, will be quick to take offense. Other times, Joe's obsessive questioning of medical decisions will leave Cass near tears. "The only constant people the baby has are me and Cass," Joe believes. "I'm his advocate. I'll fight with the whole world to protect him."
Even religious faith, so vital in their lives, sometimes crumbles into a doubtful numbness. But then, they reach deep into themselves and find their faith again. They're ready the next day to wage another battle for their baby's life. They are, once again, breathing for Zeke.
May 2. This is the day technology, science, faith and prayer all come together to rest on the shoulders of a baby weighing 3 pounds and 8 ounces.
This is the day Zeke comes off the ventilator. It is vital to take him off the machine because staying on it will continue to scar his lungs.
The Harigs are quiet today, ready to accept that this is where it could all end, with Zeke simply being unable to breathe on his own.
At noon, Zeke's oxygen saturation levels suddenly start dropping. Hope plummets with each drop. A little later, the nurses start to untangle the infant from the tubes that have been part of him from the day of his birth. Everyone in the room involuntarily takes a deep breath.
"We're all breathing for Zeke," Cass says.
Joe and Cass leave the room during this procedure. A nurse sits Zeke up for a quick Polaroid picture of him without any tubes. Another nurse deftly puts nasal prongs in Zeke's nose and hooks him up to a CPAP machine, which feeds him oxygen along with some air pressure. But essentially, Zeke is breathing on his own.
Cass and Joe return and are incredulous to see their son's face unobstructed by tubes. "Oh my God, he's beautiful," she says.
Cass begins to sob and laugh at the same time. Joe's eyes are bright and he looks as though he has coiled into himself. His quiet intensity is frightening.
But as minutes pass and Zeke is still doing fine, Joe suddenly bursts into tears. Months of tension find their release as his body heaves with sobs. Then, the old, confident Joe returns. "He is coming home now," he says.
The mood in the room is now festive, the nurses looking like proud parents themselves. Everyone is beaming. Zeke has been off the respirator for almost an hour.
"This is the day we have waited for and feared at the same time," Cass says. "Can he do it?"
The answer is yes. Three days later, Zeke weighs almost four pounds. The Harigs are now confident that their son is coming home.
But first, Zeke must be weaned off the Decadron -- a process that is more trial-and-error than exact science. He must have the hernia surgery. He has to learn how to bottle-feed.
And on May 22, there is more bad news. Zeke has retinopathy of prematurity (ROP), an eye disease that can lead to blindness. High amounts of oxygen given to very premature babies can result in the growth of abnormal blood vessels, which can detach the retina.
Still, it is possible that new, healthy blood vessels will continue to grow and the problem may resolve itself. They will monitor his eyes weekly.
And so it goes. Zeke is now growing quickly. On May 23, he is bottle-fed breast milk for the first time. He is exhausted after drinking only half an ounce. But three days later, he downs a full ounce.
The battle to wean him off the Decadron continues. The weekly ROP tests show no progression of the disease. Later, they even show some new eye growth. And in the meantime, his weight keeps climbing.
Zeke's actual due date, June 10, comes and goes. He now sleeps in an open crib and weighs 6 pounds. He is finally off the Decadron and consumes over 1 1/2 ounces of milk every three hours.
The only obstacle left is the hernia surgery. Most babies go back on the ventilator for at least 48 hours after the surgery. Given Zeke's bad lungs, no one relishes the thought.
But the surgeon, Dr. Klein, decides to try a spinal instead of general anesthesia, in an effort to avoid the ventilator. No one knows if it will work on Zeke.
It does. On June 19, Klein operates and is successful. Zeke does not have to go back on the ventilator. Joe and Cass jump for joy at the news. They gaze at each other, hardly daring to voice their thought: Their son is coming home.
June 25, 1998. The big day. The moment that the last four months have been building up to.
All week long, the Harigs have had a sense of controlled joy and occasionally uncontrolled panic. They have been through a heady swirl of classes to prepare for caring for Zeke at home. They have taken crash courses in CPR, rescue breathing, chest compressions, and how to handle his oxygen tank and his monitor.
And yet, when the big day finally arrives, they are terrified.
"The last four months, somebody else was responsible," Cass explains. "If something happens to Zeke now, it's (because of) me. And that will destroy me."
As word of Zeke's discharge gets around, nurse after nurse stops by to say goodbye to him. They kiss and hug the infant. He is now 7 pounds and 4 ounces, about the average size of a newborn.
Laurie Fortune, who had taken care of him on his very first day, makes him a tiny cap the same size that he had then worn. The cap looks comical on Zeke now.
Nurse Nancy Ludwick starts crying. "I miss you already," she says. "You better come visit or we'll hunt you down."
All the doctors and nurses have made the same request. Send us pictures around the holidays, they say. Bring the kid in periodically. This is their reward, their proof that this hard, gut-wrenching work is worth it.
And so begins the slow, emotional processional down the long hallway out of the NICU, punctuated by frequent stops. At one point, it seems as though everyone is crying.
Then, they are in the revolving doors that will spit them out of the hospital and into bright sunlight. It is Zeke's first taste of sunshine, his moment in the sun.
"He's freeeeeeeeee," Cass yells. "I'm taking my baby home."
Next, there is the slow, careful drive to their Goodyear Heights home. On the front porch is a small, handmade sign that reads: "Welcome Home Zeke." Inside, little Noah waits impatiently for the baby brother he has occasionally visited in the hospital. Shea, the black Labrador, paces anxiously, knowing that something is up.
Joe grabs Zeke's portable oxygen tank while Cass carries in the car seat with its precious cargo.
They enter their home, anxious and eager. They know that bringing their son home does not magically cure him. They know that multiple, heart-stopping returns to the hospital are possible. They know that they are now exclusively responsible for caring for a baby boy with damaged lungs and bad eyes. They know that he could be on oxygen for a long time; that he may have learning disabilities.
But they also know this: That they will love him and care for him to the best of their ability, with every ounce of their being. That they will continue to fight for him and protect him as zealously as they have for the past four months. And that this love, this fierce, burning, single-minded love, will save him. And them.
And so the Harigs enter their house looking resolutely ahead at an unknown but promising future.
Four months and a day after his birth, Ezekiel James Harig is finally home.
Akron Beacon Journal
Sunday, July 25, 1998