By John Crandall
Article originally published July 1, 2011
It wasn’t the call the Taylors were waiting for.
For a split second, when Ani Taylor heard the phone ring Wednesday afternoon, the Rancho Santa Margarita woman felt a burst of hope.
But the voice on the other end didn’t give her the news she wanted.
Instead, the speaker said they had to get their daughter to UCLA Medical Center immediately.
The test results showed that 5-month-old Ruby Jane had gotten worse.
Rushing up to Los Angeles as fast as possible, the Taylors tried to keep each other awake as they drove.
Ruby, their “little jewel,” suffers from a disease that only one in a million people has.
And the message they were waiting for, that they’re still waiting for, is the one that says simply, “We’ve found a donor.”
Ruby needs a liver transplant.
It’s a warm Tuesday evening, June 28, the day before the Taylors hurried Ruby to Los Angeles. The husband and wife are hard at work getting ready to feed her.
Because of Ruby’s illness, a rare liver condition called Caroli disease, Ruby needs a tube that pumps nutrients directly into her bloodstream.
With Ani sitting between the kitchen and dining room table, the Taylors work together to sterilize the equipment.
It’s important to keep the place as clean as possible. The baby’s so young and ill that a slight infection could be fatal.
Ani’s parents are baby-sitting the Taylors’ other daughter, Kate, 3.
“We’ve become nurses through this process,” Ani, 26, jokes while preparing the intravenous tube. “It’s not easy, but it's all the stuff we’ve learned to just keep her safe, to keep her as healthy as we can.”
Matt, 31, helps open a clear plastic bag full of nutrients that Ruby needs. It looks like white paste and smells like sweetened milk.
The tube will stay in Ruby’s right arm for about 16 hours.
After placing the tube, the Taylors sit on a couch in their living room with a sometimes fussy, sometimes quiet Ruby on Matt’s lap, and they tell their story.
Ruby Taylor was born Jan. 5, 2011. The Taylors’ second daughter had dark brown hair and big, beautiful eyes.
Ani said they named her after her great aunt. That and, Ani adds, the name “fits her.”
“She’s a little jewel,” says Ani, who stays at home with the children.
When she was born, Ruby did have some jaundice—her eyes and skin had a yellow tint to them—but that’s normal for many babies.
With most infants, the condition disappears after a few days.
However, after two months, Ani and Matt noticed that Ruby’s color had deepened.
They took Ruby to Children’s Hospital of Orange County in Orange for her two-month checkup.
That night, a doctor called and said they needed to return right away.
Before the call, Ani said, they didn’t think anything was out of the ordinary. But the message was “like an A-bomb dropped on our family.”
The doctors had to run tests. A lot of them.
'THIS IS OUR LIFE'
The Taylors stop their story.
They think there might be air in Ruby’s feeding line.
It’s a tense moment. If they don’t remove the air from the tube, it could go into her bloodstream.
A large enough bubble of air in the bloodstream can block blood flow to the heart, causing death.
They seem unsure whether it’s air or not, but they quickly work to dislodge it.
They speak in short sentences, working to help their daughter.
When they finish, satisfied that the obstruction—whatever it was—has been removed, they return to their normal, jovial selves.
“Little emergency. I’m OK,” says Matt, an account executive with an online marketing company, visibly relieved.
“This is our life,” Ani jokes later. “We hate air now. We’re constantly trying to get air out of that stupid line. “
Crisis averted, they resume their story.
'WHAT'S WRONG WITH OUR CHILD?'
The Taylors said they never expected something like Ruby’s illness to happen to them.
They had recently moved into their house in Rancho. They had a beautiful daughter, Kate, and, of course, Ruby Jane. Matt had his career.
“I was sitting here on the couch, and I told Matt, ‘We’re so blessed. We have such a blessed life that it’s kind of scary, that I wonder when our trial’s going to hit,’” Ani said. “And it was [going to hit], two days later.”
That’s when they got the call urging them to get Ruby to CHOC as soon as possible.
Physicians performed a number of tests over about two weeks, including exploratory surgery, where surgeons cut a 7-inch incision into Ruby.
Both of the Taylors recall the wrenching experience of placing their daughter in the doctors’ hands with nothing to do but pray, cry and hold each other.
“Physically, emotionally, spiritually, every bit of us was just into her and wanted the best for her,” Matt said.
Ani called it “the worst day of my life.”
After the two weeks of tests, the hospital released Ruby, telling the Taylors that they couldn’t diagnose her and that they should just wait and see what happens, Matt said.
It was, to say the least, confusing.
“How come they don’t know what’s going on?” Matt remembers thinking. “You can’t tell us what’s wrong with our child?”
Back to June 28. It’s the longest amount of time the Taylors have been out of the hospital—three weeks, not counting regular weekly checkups in Los Angeles.
The Taylors are loving parents, cooing, “You’re OK,” to Ruby when she cries, putting a white and yellow bow on her head so she’ll look good for a guest, making sure she gets her vitamins on time and tracking her food intake.
The duo finish each other’s sentences and share the glances and subtle touches of newlyweds even almost five years after their wedding.
The Taylors met in Oahu, HI. Ani was studying special education at Brigham Young University-Hawaii, and Matt had just graduated with a degree in international business.
The two fell in love, and about a year later they were married.
Each said the other works so hard for the family, and they both appreciate it.
“She tries to do everything,” Matt says of Ani. “I mean, I try to help her out to ease the burden …”
Ani says, “I feel like he does everything.”
“No way,” Matt responds sleepily.
She continues, “He gets up with the baby in the middle of the night, [and] works all day.“
The say they couldn’t have made it through Ruby’s trials this far without each other.
“There’s no one else in the world that understands emotionally what I’m going through except for him—because he’s going through the same thing.” Ani says. “No one loves her more than we do.”
“It’s all about the teamwork,” Matt says.
“Definitely,” Ani adds.
“I don’t think one of us could just do it alone,” Matt says.
In addition to their love for their daughters and each other, they also share something else: a lack of sleep.
At night, Ruby’s been waking up every hour or so.
Ani says that as soon as the interview is over, the young mother will probably face-plant on her pillow and conk out.
The doctors at CHOC may have told them to wait and see what happens with Ruby, but the Taylors said no.
“As a mother, you know, I wasn’t just going to sit around and wait for her to get better,” Ani says.
Ani called everyone she could think of to find what was wrong with her daughter before reaching out to a specialist at UCLA Medical Center.
Ani said she called the doctor at least eight times a day for about four days. And, eventually she got through to Dr. Suzanne McDiarmid of the pediatric liver transplant program at UCLA.
And in Ruby’s third month of life, she was heading up to UCLA for more tests.
After a few days, McDiarmid diagnosed Ruby with Caroli’s disease.
Caroli’s disease is a rare illness—the odds are of having it are literally one in a million.
The liver has a number of functions in the body, including filtering toxins out of the bloodstream and helping the digestive system break down nutrients in food and drink.
Caroli’s disease interferes with the liver's ability to break down nutrients.
Some of the disease's symptoms can include fever, abdominal pain, and, as in the case of Ruby Jane, jaundice.
The Taylors finally knew what was wrong with their daughter.
Now they just need a transplant.
The organ can come someone who is deceased or, because the liver is a regenerative organ, a living donor.
Matt and Ani are not a match.
The Taylors have placed Ruby in her crib for a nap.
They hope she will stay asleep. Caroli’s disease makes her itchy and lethargic and can sometimes make her belly swell like that of someone who is malnourished.
They keep an eye on her through a portable video monitor that shows a live feed of Ruby’s room.
It’s obvious she’s never far from their minds. Matt keeps checking the video. Occasionally he shows it to Ani, and they smile.
Even at five months, Ruby has an obvious personality, the Taylors say.
She’s wary of newcomers but sweet with those she loves.
"She's just constantly gently touching our face," Ani said. "She just has these big, blue eyes, and she looks straight through you. And you swear she's looking right into your soul."
Ruby will turn 6 months old July 5. However, if she doesn’t get a liver transplant within a few weeks she might not see her first birthday.
That’s why the Taylors keep waiting for news of a donor.
Adding to the Taylors’ challenges is Kate.
Kate’s been having trouble sleeping lately. Ani thinks that it's stress over Ruby’s condition and the lack of attention Kate’s been receiving.
The Taylors have to argue with her to get her to bed. Kate even has recurring nightmares that her parents leave her in the night, to go to the hospital.
But the Taylors say Kate is also “Ruby’s protector.”
When Kate’s friends visit, Kate makes them wash their hands, using sanitizing soap, and keeps them from touching the baby.
“I caught her in the car singing to Ruby the other day, and she was going, 'You neeeeed a liiiiiver transplant,' ” Ani says, smiling.
In the Taylor househould, pictures of Ruby and Kate are everywhere, especially since Ani’s hobby is photography.
'OUR HANDS ARE TIED'
Ani and Matt, both members of the in Rancho Santa Margarita, say their faith has kept them going strong.
“That’s a really important part of all of this … keeping our spiritual tanks full,” says Ani.
The community has been helping them too.
Ani’s parents help watch Kate. Church members, friends and family members provide meals. And local businesses hold fundraisers for them.
Ballpark Pizza Team is holding a fundraiser for the couple July 16; 20 percent of the sales will go to support Ruby Jane. (See end for more info.)
Matt’s insurance pays for 80 percent of the hospital bills, but the costs are always there. Every time they check Ruby into the hospital, it’s $500.
Plus Ruby needs nutrient packages that she has to absorb into her bloodstream, as well as vitamins and antibiotics.
Not only that, but if Ruby gets a liver transplant, she’ll need to stay on anti-rejection medication her entire life, to keep her body from fighting off the donated liver.
Even with all the community support, it still hurts the Taylors that they can’t stop their child from suffering.
“Our hands our tied,” Matt says. “No matter what we want to do [to] help her go through it, we can’t physically do it.”
“That’s the worst thing [about it], that as a parent, you just want to take away any of your child’s pain,” Ani adds.
The Taylors say that in addition to finding a donor for their daughter, they hope some good comes from this bad situation: that people who hear about Ruby’s struggle consider becoming organ donors.
“Thousands of people die every year waiting for organs," Ani said.
As a side note, the Taylors would also appreciate if people prayed for them.
'ONE DAY AT A TIME'
It’s Wednesday night, June 29, and the Taylors are spending time with Ruby at UCLA Medical Center.
The doctors have put Ruby under observation. Her latest lab work had brought some bad news: Her sodium levels had increased.
The Taylors plan to stay with her at the hospital as much as possible.
Ani’s parents are watching Kate.
The Taylors even have a chair and couch at the hospital that they’ve been sleeping on, off and on for the past few months.
Ruby might have to stay there until she gets a new liver, which could arrive any time in the next six weeks.
It’s a tough road ahead, but they’ve got each other, their daughters, their family, their friends and their faith.
They just have to wait.
Twenty-four hours earlier, Matt said, "We just take it one day at a time, I guess."
"One hour at a time," Ani added. "Hour by hour."
By Thursday, June 30, the doctors had upped Ruby Jane's transplant score from 22 to 25 on a scale to 40.
The higher the score, the more grave the condition and the greater her priority on the list of transplant recipients.
Ruby must remain at the hospital until she gets a new liver.
Ani says, "We are here for the long haul now."
So the Taylors keep waiting.
Editor's note: Ruby Jane Taylor died on Aug. 11 from complications of Caroli Disease. Read the story at http://ranchosantamargarita.patch.com/groups/around-town/p/ruby-jane-connects-a-community-in-life-de...