Ashley's gift: A liver for LuLu
Heather May The Salt Lake Tribune
"A lot of my emotions are tied up in thinking about that family and praying for that family. It's amazing in someone's darkest hour they can say, 'Take what you can from this person that we love and give life to [up to] eight other people.'" -- Liz Badger
Murray » Liz Badger is scouring every cupboard and drawer, tossing enough kitchen containers, blankets and clothes to fill at least a dozen bags for charity.
This time, though, she's not nesting before bringing a baby home from the hospital. She's working off her anxiety about taking her dying daughter back there.
In a pink bedroom down the hall, 12-month-old London slumbers most of the day, in end-stage liver failure.
Affectionately called LuLu, the dark-haired, dark-eyed girl is one of the sickest children on the pediatric transplant waiting list in the Western United States. Without a new liver soon, her doctors fear, she won't make it.
Her family mostly stays home to avoid germs so she remains healthy enough for surgery. They watch movies. They play games.
They wait for someone else's child to die.
Liz's cell phone is always within reach.
But part of her hopes it won't ring, not yet. LuLu is sick but stable. And in the silence there is solace: Another family has another day with their baby.
The phone is quiet for now, but not for much longer. The life of another dark-haired, dark-eyed girl is also fading.
'I love you, mom' » Nearly 200 miles away, Camie Lacey drives her daughter, Ashley Maynard, to her bus stop in a small eastern Utah town on Jan. 5. It isn't their routine, but it's too cold for her 12-year-old to walk. As the bus approaches, Ashley steps out of the car and says, "I love you, mom."
Camie sees her wait for one car to drive by. Realizing Ashley doesn't see the next one, Camie calls out her name and watches Ashley turn toward her. The car strikes Ashley, and she rolls onto the hood, then falls to the street.
Camie knows there is little hope when she gently pushes up Ashley's eyelids in the Vernal emergency room: The sparkle is gone.
In the coming days, Camie will pray for her firstborn to let go.
Time running out » At 2 months old, doctors diagnosed LuLu with Alpha-1 Antitrypsin Deficiency. The rare genetic disorder traps a protein in her liver, causing scaring and preventing it from controlling infections, filtering toxins and processing food.
As she grew, LuLu didn't have the fat, dimpled fists of a healthy baby. Every protruding vertebra in her back was a reminder of the food she couldn't eat. The disease made her nauseated and prevented her from digesting the nutrients she eventually had to take through a tube.
Yet her belly was so swollen. High blood pressure in the veins leading to her liver caused fluids to leak into her abdomen, which had to be drained by a needle.
Before her first birthday, it was clear she needed a liver transplant.
Liz and her husband James, both 28, were determined one of them would give their daughter life for a second time. In theory, a surgeon could remove a portion of one of their livers for LuLu.
"I want us to have matching scars," Liz wrote in November on a blog chronicling LuLu's illness. "I want her to be able to look at me whenever she feels self-conscious and see how proud I am of my scar."
But both parents were ruled out, and doctors at Primary Children's Medical Center in Salt Lake City put LuLu on the waiting list for a deceased organ donor. When her kidneys started to fail in December, she advanced to the top.
Liz learned LuLu's ideal match would come from a child. That kept her up at night. Will he or she have been ill for months? Or will the death be unexpected?
"I will be sick for that mom that wants to die because her baby is no longer in her arms," Liz wrote at about 2 a.m. in late December during LuLu's third extended hospital stay for an infection and care that had her kidneys working again.
"I would want to die, too. And that is why I feel heartbroken tonight and every night as I lay thinking about this wonderful yet horrible process of organ donation."
Letting go » At LuLu's weekly appointment on Jan. 8, Liz sings the Bob Marley song "Three Little Birds." LuLu likes to shake her belly up and down to the words: "Don't worry about a thing, 'cause every little thing gonna be all right." Today, Liz wants to calm LuLu, who has just thrown up, and convince herself that the lyrics are true.
Linda Book, Primary's medical director of liver transplantation, tells her and James, "I know you're anxious to get this finished and get her well."
Liz struggles to agree. "We are," she says, thinking of where the liver will come from, "but it's a strange spot to be in."
Just down the hall, unknown to Liz and James, Ashley lies still in the pediatric intensive care unit.
The sister of 7-year-old Samantha, 5-year-old Abigail and 13-year-old stepsister Danyeal, Ashley is in sixth grade at Vernal Middle School. She is the type to comfort a crying classmate at lunch and to correct her Sunday school teacher's grammar.
She dreams of becoming a veterinarian. As a younger child, she toted around a toy bat dressed in doll clothes, trotted through the house pretending to be a horse and made nests in the backyard.
The crash fractured her skull and stopped her heart.
Emergency room physician Aaron Bradbury was just ending his shift at Ashley Valley Medical Center, where severe trauma cases are unusual. Hearing an ambulance was on its way carrying Ashley, he stayed to help.
Several of the staff resuscitating Ashley knew her. When they found a pulse -- she may have gone up to 20 minutes without one -- Bradbury felt something like regret.
"I knew what was going to be in store for the family," he said later. "She might die in the ICU or she could persist in a vegetative state for years."
Ashley was flown to Primary Children's, where doctors left her in a medically induced coma, controlled her temperature and increased her blood pressure to move blood through her brain.
But days later, her brain is still swollen.
Camie, 35, already knows it's time to let go. She's been looking in Ashley's eyes every day and can't find her daughter.
"The best part of Ashley was her heart, her soul, and then her brain, her intelligence," Camie says later. "I knew she wasn't going to come back."
'The most difficult thing to do' » Refusing to let Ashley become an organ donor, Camie felt, would be like killing another child. She asks doctors for reassurance that the drugs keeping Ashley paralyzed and sedated aren't ruining her organs.
Camie has a choice: If she turns off the ventilator and Ashley's heart stops quickly, she could likely donate her liver and kidneys. But if she survives longer than an hour, low blood pressure and oxygen would damage her organs.
If Camie waits and Ashley's brain stops first, doctors can keep her on life support and more lives can be saved.
Camie, a member of the Church of Christ, starts to pray for Ashley's brain to stop. She also hopes families awaiting a call don't feel guilty.
"It's got to be the most difficult thing to do - wait for another child to die," Camie says later. "I can't imagine the feeling."
To better assess Ashley, doctors stop administering the drugs sedating her, and she begins showing primitive responses, blinking and coughing.
Camie runs into her room and kisses her, asking, Are you going to be my miracle baby? She is so close she can taste a salty tear from Ashley's eye.
Ashley's father, stepfather, aunts and uncles gather at her bedside. She isn't awake. But for the first time, Camie feels Ashley is there, spiritually, to hear them say goodbye.
After her last visitor leaves in the morning, Ashley stops responding. The swelling has forced her brain stem into her spinal column.
She is pronounced dead around noon on Jan. 13. On a ventilator, her heart continues to beat. Ashley will give her heart, pancreas, kidneys and liver.
Camie can't part with her eyes.
She lays in bed with her daughter. She bathes her and combs her hair.
'Can you say a little prayer?' » At 3 the next morning, Gina Wiser's pager wakes her up.
A transplant coordinator at Primary Children's, she confirms the liver offered to LuLu is a good match, then dials Liz.
Liz cries, thinking of the donor's family.
Wiser consoles her, sharing how tissue donation helped her own family cope with the death of her 14-year-old brother, Zachary. "This is a good thing," Wiser tells her.
Behind the scenes, the symphony of donation is playing out.
Intermountain Donor Services must find a home for the donor's organs, and the transplant surgeons must be in the room at the same time to remove them.
As LuLu's family waits more than 30 hours in the hospital, they hold and play with her as much as they can. She sits on a mat on the floor as James and Liz blow bubbles into her startled face.
When surgery finally starts, at noon on Jan. 15, LuLu's 3-year-old brother, Jonah, her parents and grandparents say good-bye. "LuLu's about to get a liver. Can you say a little prayer in your heart?" Liz asks Jonah as she touches his chest.
Jonah folds his arms and bows his head {and says a beautiful prayer}.
The surgery lasts for about 10 hours. Chief pediatric surgeon Rebecka Meyers works on disconnecting LuLu's bumpy, scarred liver. At the same time, Willem Van der Werf, Primary's surgical director for liver transplants, is removing organs from the donor.
Once he divides the liver for LuLu and a child in California, Van der Werf walks the soft, pink left lobe to LuLu, whose room is next door.
"You just want her to move without being connected to anything," James says of his post-surgery hopes. "I want her to be able to wrestle with Jonah. [Go] on a simple walk."
At midnight in the ICU, Liz places a gloved hand over LuLu's already-shrunken abdomen and on top of her new liver. She quietly says a prayer of thanks to her daughter's "donor angel."
Caressing LuLu's head, she says: "You did it. You got a new liver."
'She's dying a hero' » Officially, Liz and James only know LuLu received the left segment of a liver. But they're convinced they've seen their angel.
On the morning of LuLu's surgery, Liz received an e-mail from her sister urging her to read a story in The Salt Lake Tribune.
Liz stares at Ashley's quiet smile and reads about her family's decision. "I always had a feeling in my heart that my little girl would one day become a hero," William Antico, Ashley's father, told the newspaper. "She's dying a hero."
Organ donation is anonymous to allow families to give and accept freely, without the pressure of knowing each other, says Karen Hannahs, a family liaison for Intermountain Donor Services.
Liz and James feel compelled to go to Ashley's funeral to pay their respects. They need to know about the girl who saved LuLu's life.
Three days after LuLu's surgery, they leave her in intensive care to drive 170 miles east through the night and snow to Vernal.
They arrive early to the viewing, offered by the LDS Church to be held at a stake center, and are alone with Ashley, in her white casket with images of horses, for a half hour. Liz gently strokes her cheek, holds her hand and touches her where her liver was.
Thank you, Liz says, I am sorry you had to die.
An LDS bishop comes in and, seeing Liz and James' tears, asks how they know Ashley. The couple, also members of the church, hesitate. They hadn't planned to explain their connection to Ashley, wanting to keep the day's focus on her. {and avoid meeting the family}
After the bishop asks for a third time, Liz whispers, "We believe Ashley was the donor for our baby."
In tears, the bishop embraces them, insisting Camie will want to know.
At peace » Driving to the stake center, Camie prays, wondering how she will make it through the day. When she walks into the room, she sees her answer: James and Liz are standing next to Ashley's coffin.
A relative eagerly tells Camie their little girl got Ashley's liver, and Camie instantly feels at peace.
The two mothers hold each other and cry.
Without knowing it, they had been praying for each other for days.
Invited to stay as the casket is closed, Liz and James listen as the family prays for the driver who hit Ashley and the people who received her organs. They watch as Camie kisses Ashley for the last time.
At the funeral, Camie guides them to sit among Ashley's relatives.
"She's a piece of our family," Camie says of LuLu. "They always will be."
'You can be OK' » A week later on Jan. 26, Camie and Liz sit on a couch, holding hands at Primary Children's. Camie has been following LuLu's progress on Liz's blog and she and Ashley's stepfather, Len Lacey, want to meet her.
As the two couples talk for more than an hour, the mothers occasionally touch their matching letter-A pendants.
Liz wants a picture of Ashley to sit next to photos of her children. She vows to Camie she will raise a daughter to make her proud; Ashley, she says, has set the bar.
"I wish more than anything she was alive," Liz says.
Camie comforts Liz. "You can be OK, because I'm OK," she says. "I've spent my whole life trying to get me and my family, my kids, to heaven, and I got one there."
Bradbury, Ashley's emergency room doctor, now says he is comforted she lived so that she could save five other people. Camie is proud that a boy in Canada has her heart; a girl in San Francisco has part of her liver; a Minnesota woman has one kidney while a Utah woman has the other, along with her pancreas.
Intermountain Donor Services confirms LuLu has Ashley's liver. There will always be a risk she could reject it, though the chances are highest in the next year. A lifetime of anti-rejection drugs will bring their own problems.
But within weeks, LuLu will be home, rolling on her stomach, finally hungry, eating cereal and cupcakes and chocolate. She will jump higher in her bouncy swing and laugh louder. Liz will feel Ashley gave LuLu not only life, but some of her own zest to fully live it.
For now, holding LuLu in the hospital, Liz points to Camie and tells her baby, "You can say, 'Mama.' She gave you life, too."
Camie kisses LuLu's bandaged stomach, saying. "I love you, sweetheart."
In the room, she can feel Ashley again.
The sparkle is back.
hmay@sltrib.com
Note to readers
In hopes of encouraging organ donation, Liz and James Badger allowed The Salt Lake Tribune to follow their daughter London and her wait for a liver. In January, by coincidence, the newspaper separately covered the decision of Ashley Maynard's family to donate her organs. As the two stories intertwined, both families agreed to The Tribune's continued reporting.
