Debbie Westphal sits on her living room couch, wearing pajamas and sipping Diet Coke. She turns on her laptop and searches for a phone number.
She calls Trishann Cook at 6:10 on a warm, misty Sunday morning in September.
"Hello," Westphal says. "This is Debbie from the University of Michigan transplant program and I have a heart offer for Kaden."
Sometimes,theydrop the phone in shock and sometimes they explode with excitement -- "Ohmigod! Ohmigod!" -- and sometimes, on rare occasions, they aren't ready and refuse.
But Trishann is calm.
"When do we have to be there?" she asks.
"Not necessarily right now," Westphal says. "Let me ask you some questions. I need to know how Kaden is doing. Does he have a cold or runny nose?"
"Yes," Trishann says. "He was just at the clinic the other day."
Trishann's 2-year-old son, Kaden Cook, has a rare heart disease and needs a transplant or he will die. If Kaden is sick, he might not get a new heart; and if he doesn't get it now, there is no guarantee when another heart will become available. One child in Ann Arbor has waited for more than a year.
"Did he have a fever?"
"No."
"Let me call the doctor."
Westphal dials Dr. Richard Ohye, the pediatric transplant surgeon, who will decide in a matter of seconds if Kaden gets the heart.
"I just talked to the mom," Westphal says. "Last week, Kaden had a runny nose, runny eyes, but no fever."
"That's fine."
It's on.
Just like that.
Westphal calls Trishann.
"We can leave here in 15 minutes," Trishann says. "We can be there in an hour."
"I don't want you to get in an accident. How about an hour and a half?"
"All right."
Trishann and her husband, Kevin, rush around their apartment in Fenton, packing clothes and grabbing the diaper bag, but they forget Kaden's favorite teddy bear. They never expected a heart so soon, 37 days after Kaden was put on the waiting list, and they didn't pack because it seemed so far off.
Trishann calls her cousin to watch her three other children.
Kevin puts on blue jeans, a gray T-shirt and an Old Navy baseball cap.He tries to call his parents in Sault Ste. Marie. He's dialed the phone number hundreds of times, but he's so excited, so scared, so freaked out, he can't remember it.
Trishann slips into a long-sleeved sweatshirt and blue nylon pants, her typical outfit when she goes out in public, to cover the dark moles on her arms and legs. Usually, it takes her almost an hour to get ready, to cover the scars on her face with makeup, but that's hardly a thought now.
Her only concern is her baby boy, because as she knows, so many things can go wrong.
Westphal, a transplant coordinator, has a makeshift office on her coffee table. Laptop. Cell phone. Pager. Home phone with call waiting. She'll make 50-100 phone calls in the next two hours to set up Kaden's transplantat the University of Michigan C.S. Mott Hospital in Ann Arbor.
She's red-eyed tired, after working all night to set up a liver transplant, and she doesn't have time to make a pot of coffee or even take a shower, as the sun begins to rise.
Westphal calls the operating room, admissions, anesthesiology, floor nurse and pediatric social worker. All around Ann Arbor, doctors, nurses and specialists are paged to come into work.
Westphal also calls U-M's emergency transport service, Survival Flight. The service will fly a surgeon and an assistant to Kentucky to remove the heart from a child who is brain dead.
Two procurement teams from hospitals in other states are rushing to Kentucky to harvest the child's liver and kidneys.
Westphal calls the Kentucky hospital to find out what time the U-M team should arrive. The time is unclear because they are last in line.The heart is always last.
Down a long empty hallway, not far from the emergency room in Ann Arbor, J.J. Jorgensen sits in the Survival Flight offices, working the phone. Survival Flight has 44 full-time employees, three helicopters, a Cessna Citation jet and a ground ambulance. It handles 1,400 patient transports a year, including 100 organ procurements.
The jet is taking a patient to St. Paul, Minn., so Jorgensen goes down a list and finds another plane at Willow Run Airport, about 10 miles away.
Sitting on her couch, still in her pajamas, Westphal calculates the time line, scribbling notes on the back of a sheet of paper: It will take the procurement team about 20 minutes to drive to the airport, the flight will last about 1 hour and 15 minutes, and it should take about 20 minutes to get to the hospital in Kentucky. When they get back to Willow Run, the new heart, packed in ice in a red cooler, will be rushed to Mott in a helicopterthat can cruise at 160 m.p.h.
She adds in a little extra time, because there are always delays. Westphal calls Ohye, gives him her estimate and asks when he wants Kaden in the operating room. Ohye figures the operation will begin around noon.
Kevin is driving 90 m.p.h., riding up bumpers and pushing people out of the way, heading south on U.S. 23 in a new Chrysler minivan that he bought for this moment, afraid their old van with 165,000 miles would break down.
The sky is blue-gray. A light rain spits on the windshield, and almost everybody is driving with headlights on.
Kevin is scared and sad and happy -- the most profound, powerful emotions he's ever felt.
Trishann is in the back with Kaden, unbuckling the car seat. Even though it is against the law, and it's absolutely foolish, risking his life at a time when so many are working to save it, she takes him out of his car seat, holding him tight.
At the hospital, they are sent to a room in the pediatric cardiology unit, on the fifth floor, where they spent nine days last spring when Kaden's condition was diagnosed. He has restrictive cardiomyopathy, a fatal disease that affects the heart's ability to pump.
Trishann tries to fill out some paperwork but she can't remember basic information. Tears run down her face. "I can't fill this out," she says. "I can't think."
Dr. Greg Ensing, a pediatric cardiologist, comes into the room and sits in a chair by Trishann. Ensing holds a plastic toy and hands it to Kaden, who is wearing Elmo pajamas and blue slippers.
"What's your name?" Ensing asks, in a cartoon voice. "Is your name Alfred?"
Kaden looks at him quietly, handing him a plastic spoon.
"In my mind, he has an eight in 10 chance of going home and doing really well," Ensing says, looking up at Kevin, who is standing at the door with his arms crossed. "He's got nutrition on his side."
Kaden has had a healthy appetite lately and seems strong. Many times, children get so sick waiting for a heart transplant that they end up in the pediatric intensive care unit. Kaden looks like a normal 2-year-old, with scraped knees from playing outside.
"What are the chances the heart won't work?" Trishann asks.
"The chances should be very small of that," Ensing says.
He pauses and moves his hand like a roller coaster. "You know, he's going to go up and down."
Trishann can hear him talking, but she has a hard time keeping it straight. She hears words like "harvesting" and "a small chance of catastrophic consequences" and it's coming through a fog, unable to settle into cohesive thought. Most parents are thrilled when their child is offered a heart. But Trishann is afraid Kaden's going to die. Nothing in her life has ever gone right, and she has no reason to believe this will either.
She waits in a room on the fifth floor, one floor below the unit where she recovered from five surgeries as a child.
Trishann, 32, was born with a rare skin disorder called congenital pigmented nevi. Eighty-five percent of her body was covered with black moles, which doctors expected to turn cancerous.
"She was given a 15 percent of living," said her mother, Fran Horka. "But I never thought for a day she wasn't going to make it. I tell Trishann, right now with Kaden, it's in the hands of the Lord, just like when you were born. I've been down this road, believe me."
Trishann had plastic surgery -- gruesome, painful operations and skin grafts -- to remove some of the moles from her face and back, from the time she was 3 months old until she was 15.
"Her back would crack and bleed," Fran said. "When you have a newborn baby and you go to take her little shirt off, and you find blood all over, I thought I was going to die. I'd call the doctor, just freakin'.
"She never complained, not even as a baby. I had to put toilet paper rolls on her arms and tape it up, so she couldn't move and touch her face. She had to sleep like that."
At times, Fran wasn't allowed to pick up her baby daughter because her back was raw. "You ever smell rotten meat?" Fran said. "I'd have to burn her back twice a day with silver nitrate sticks, to close up the burns."
The moles were not cancerous, although that could still happen.
The disorder has had a profound effect on Trishann's view of herself and the world. She has never worn a bikini, miniskirt or tank top in public.
She thinks that people stare at her. "I'll be in the grocery story and people are staring at me. People say to me, 'I wouldn't care.' And I'm like, bull, you'd care. You would not walk into a place and have the whole freakin' place staring at you."
She has a scar on the right side of her face, which looks like somebody scraped her cheek with a dull knife, and a mole on her upper lip, a combination that makes her expression a constant scowl. People have told her that they thought she was mean and angry until they got to know her.
She refers to the moles as birthmarks. "The birthmark on my back has hair," she said. "That's my biggest thing about these freakin' things. OK, I wasn't cursed enough. You had to put hair on them, too?"
On her wedding day, Trishann wore three pairs of tights to hide the moles on her legs, so she could lift her dress to have Kevin take off the traditional garter.
Even though she'd been told the disorder wasn't genetic, she didn't believe it. Before each of her four children was born, Trishann was filled with dread, wondering if the baby would have the condition.
"They thought it came from a birth control my mom was on, or it was some freak thing.
"My life has been nothing but bad luck," she said.
Fifth floor.
Sixth floor.
Thirty years later.
The son couldn't look more perfect -- with beautiful blond hair and big green eyes -- but he's dying inside. Doctors still don't know what caused his cardiomyopathy. The mother couldn't be more healthy -- she can't remember the last time she was sick -- but she's lived with the demon of disfigurement.
"God only gives you what you can handle," Fran told Trishann when they found out Kaden needed a transplant.
"No comparison, it's not even close," Trishann said, shooting a mean stare. "My surgeries were just plastic surgery. It wasn't life and death."
She spoke with an edge of anger that comes from a life of pain -- the very thing she will cling to get through this transplant.
Trishann takes off Kaden's pajamas and helps him into a hospital gown. "Get your dress on," she says.
Kaden doesn't smile. "Look at his eyes," Trishann says. "He's saying, 'Something is going on here.' "
Kevin tries to kill time. He takes Kaden for a walk, pushing him in a stroller that looks like a race car. The night before, the family went to Apple Fest in Fenton. "I took him on rides," says Dave Horka, Kaden's grandfather. "I've never seen him look so good. He was so happy. They got this one ride, a motorcycle, and he loves it because it does a wheelie and comes back down. He was laughing up a storm."
As Kaden gets a chest X-ray, Kevin sits in a waiting room, holding a rosary.
Kevin wants to take Kaden to the chapel, on the eighth floor, but Trishann doesn't want to go -- "What's God ever done for me?" she's said several times over the last few months.
Kevin insists and she agrees reluctantly. They walk to the elevator and see a familiar face, a boy they met last spring. In May, the boy's skin looked yellow as he waited for a liver transplant. Now his color is normal. "Look how good he looks," Kevin says, getting onto the elevator.
Seeing such a drastic improvement in someone who looked so ill makes them feel a little better, like this might work after all.
But approaching the door to the chapel, Trishann gets nervous. "They might be having service," she snaps. Kevin doesn't answer and opens the door. The room is empty. He stands in front of the altar, in a wash of light coming through a skylight, holding Kaden in his left arm.Kaden picks up a miniature angel figurine, and Kevin points at the Bible. Kaden seems at peace.
Trishann signs the guest book: "Kaden Chayce Cook, who will have a heart transplant today."
Last spring, before Kaden had a life-threatening procedure, Kevin insisted that Kaden be baptized. During the ceremony, hope came over Trishann. But her faith has wavered during the last few months, the hope replaced with fear and doubt.
Now she doesn't know what to think.
Kevin doesn't say anything as he puts a necklace with a cross over Kaden's head.
Trishann, who is Catholic, too, fixes the necklace, blinking back tears.
Ohye is in his office, reviewing his notes on Kaden.
Ohye, 39, has worked at U-M for two years, his first real job after 18 years of higher education: four years of undergrad at the University of Pennsylvania, four years of med school at Ohio State University and 10 years of internships, research positions, residencies and fellowships to become a pediatric heart surgeon.
"I went back for my 20th high school reunion and there are these classmates who have been working for 20 years, people who went into the military are getting ready to retire, and I have two years into my first real job," he said.
"It's delayed gratification, but I'd do it all over again."
He did 10 transplants last year.
"A transplant is not that difficult of an operation," he said. "In a heart transplant, you are just sewing the vessels together, which are fairly large. "
Kaden is a low-risk candidate because he's never had surgery. Even though his condition is expected to deteriorate without a transplant, he has stayed relatively healthy. That's why Ohye could afford to wait for the perfect heart.
He turned down two offers for Kaden.
The first came Aug. 9, the day Kaden was put on the transplant list. Ohye rejected it because the heart had stopped beating for a significant length of time.
He turned down the second because he thought that heart was too big.
"To turn down a heart isn't an emotional decision," Ohye said. He never has time to ponder it. from a medical standpoint. Yeah, I'd feel terrible if he died the week after I turned down a heart. But on the other hand, he might die because the heart isn't any good. You have to separate the emotion. I made a decision based on what was the information I had. If you do too much Monday morning quarterbacking in what I do, you'd go crazy. You wouldn't be able to do it."
Earlier this morning, when Westphal called him about this offer, Ohye decided to take it for several reasons: the age and weight of the donor, the cause of death, and the fact that the heart never stopped beating, even though the donor is brain dead. (The Free Press has agreed not to publish some details of the donor's case, to preserve confidentiality. )
Ohye is calm but intense. He runs every morning, plays softball with other docs and is trying to learn how to play golf, but the game frustrates him because he doesn't have time to do it well.
"I never get too high or too low," he said. "If you save a child after a very difficult operation, I don't go home and turn cartwheels in my front yard. But I'm happy for the family. By the same token, I don't get too low. Unfortunately, a certain percentage of kids aren't going to make it; it's horrible, a horrible tragedy and I feel horrible for the families, but it's not something that destroys me or I wouldn't be able to come to work the next day."
But it's gotten more difficult now that he has two little daughters, 17 months and 5 months old. He has more empathy for parents. "It made more of a difference," he said, "than I thought it would."
There is an aspect to organ transplants that he hates. Most of the donor deaths are avoidable. "It's terrible," he said. "A lot of them come from accidents, kids riding bikes without helmets, in cars without seat belts. Home accidents. Drownings. Kids fall in pools. Or abuse. Shaking their babies.
"I wish every parent would make their kids wear their seat belt or wear their bike helmet. I wish nobody had to die, but if they do, I wish they all donated."
By lunchtime, Kevin and Trishann have been waiting for almost four hours. The surgery has been delayed -- the Cooks don't know why -- but there are so many relatives in the room that it's easy to keep Kaden entertained.
Trishann runs into a doctor in the hallway and comes back with a report: "He said the heart wasn't here yet. It will be another hour or two."
The longer they wait, the more emotional they become.
A cloud of doom hangs over the room. Every time they kiss Kaden, they leave their lips on him an extra second, as if it's the last time.
Kevin tries to stay strong, tries to hold back the tears, but he can't. He begins to cry, dropping his head, and it turns into an uncontrollable sob.
Fran Horka puts her arms around him. "He's going to be fine. Be strong."
Then Kevin gets it together, taking Kaden from Trishann, and Trishann loses it, crying in her mother's arms
Kevin and Trishann don't show any emotion toward each other. They don't hug or hold each other. Kaden's illness has been a strain on their marriage. They had to live apart for four months, when she moved to Fenton to stay closer to U-M and he remained in the Soo to work as an auto body repairman, which allowed him to keep his insurance.
They'll deal with the marriage later. Right now, they focus only on Kaden.
Trishann expects the worst. What, exactly, are you supposed to do for your child on the last day of his life?
At 2:02 p.m., Ohye walks in. He's wearing blue scrubs and a beeper on his belt.
"How are you?" he asks Kevin and Trishann, who he's meeting for the first time. "Are you hanging in there? I just wanted to come by and say hi, so you would know my face.
"Survival Flight is at the hospital (in Kentucky) and we've seen the donor's heart and it looks good," Ohye continues. "But they haven't started to harvest it."
Trishann sits on a bench in the corner; Kevin stands apart, holding Kaden. The rest of the family is in the hallway. "In about an hour or so, we'll start the operation," Ohye says. "We'll get his chest opened. We'll wait until they are on their way. We won't take his heart out, actually, until the new heart gets here. And we'll give you an update as time goes by. As soon as the new heart gets here, I'll let you know we are starting the real part of the operation. That takes about 2 hours, from when we get started until I come out and talk to you guys."
Trishann and Kevin take Kaden to a holding area, where they will say good-bye. On weekdays the room is filled with patients and relatives. But on this Sunday afternoon, the surgical unit is deserted. The room is large and empty and cold. They seem small in the far corner.
Trishann sits in a rocking chair, holding her son. Kevin sits beside her, stroking the boy's foot.
Dr. Kanop Metriyakool, an anesthesiologist, adds a shot of medicine to Kaden's IV. It will relax him and induce amnesia so he won't remember being taken to the operating room.
Kaden cries just from seeing the needle.
Kevin gives him his teddy bear, which one of the relatives has brought from the apartment in Fenton.
It's such a sad-looking bear. Both ears were chewed off by a dog, but Kaden refuses to love another.
A nurse walks up in blue scrubs and a blue hat.
"Hi, sweetie," says Sue Flewelling, who will hand instruments to Ohye during the operation.
She's been at the hospital since 9 a.m., getting the operating room ready. She waves at Kaden and rubs his hair. "We'll see you back in the room, OK?"
Kaden takes deep breaths, his eyelids drooping, the medicine pulling him into a haze.
Trishann gives Kaden a final hug and kisses his cheek, three times.
Kevin picks him up, gives him a hug and kiss and puts him in a red wagon lined with blankets. Trishann cups her face, shaking.
Metriyakool pulls the wagon out of the room, turning the corner, leaving Kevin and Trishann behind. Kevin feels like his son is drifting away: "I don't know if I'll ever see him again."
Monday: The surgery.
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