Three Lawrence families share one common bond they encourage others to be organ and tissue donors. This 3-part series explores the life-changing nature of organ donations.
On the street
Yes, although I haven’t donated one yet. But I would donate one if I wasn’t using it.
Organ and tissue donors
Ring. Ring. Ring.
A hopeful mother smiles and her eyes light up behind her glasses.
"This could be it," she said as she gets up to answer the phone.
Nope. It's just a telemarketer.
And so the long wait continues for Shawna Davis and Jeffrey Whitenight. They are awaiting a call from Children's Mercy Hospital, where they hope their 16-month-old daughter, Addison, will have a liver transplant. She's been on the transplant list since May 29.
Addison was diagnosed with biliary atresia when she was 6 weeks old. Only 1 in about 15,000 babies is born with the disorder each year in the United States.
"It's like a birth defect where the drainage system in the liver didn't form correctly," said Angela Tendick, hepatology program coordinator at Children's Mercy Hospital in Kansas City, Mo.
Addison suffers from jaundice, and her tint has become more yellow as time passes. During the past month, she began crying yellow tears. That's because her liver is unable to remove bile.
Weighing only 15 pounds - a comparable weight for a 4-month-old - Addison uses a feeding tube about 20 hours a day. At least twice a day, Shawna fills about 10 syringes with medicines and shoots them up the tube. She rattles off what some of them are used for: clotting, calcium, Vitamin A, Vitamin D, itching, to keep fluid from her tummy.
During the past few months, Addison developed rickets, a softening of the bones that can lead to fractures and deformity.
"She has really weak bones, so she can't walk. She pretty much just lies there. She will roll, but that's about it," Shawna said.
Every Monday morning, Addison is taken to Lawrence Family Practice Center, where she is weighed and examined. She often has blood drawn from her tiny arms for lab work.
The lab results bring mixed emotions for Addison's parents and nurses. While they don't want her to feel bad, they want her to move up the transplant list, so she is closer to getting a new liver - the sickest patients are the highest priority for transplants. At Children's Mercy, there are 5 children between the ages of 1 and 5 who are waiting for a liver transplant. That number grows to 18 in the region and 246 nationally.
"We are hoping for bad labs so she will go higher on the list," Shawna said during a recent appointment with Ashley Kranitz, who has been Addison's nurse since she was born.
Kranitz also hopes for "bad" results.
"I see her at least once a week. Yes, we've gotten quite close," Kranitz said. "We love Addison very much. We sure hope that her liver comes soon. Donating organs is obviously a very important thing. It's the one thing that's going to save her."
Finding a donor for Addison proves challenging because of her weight.
"The biggest obstacle that Addison has is her size. She is tiny. For our bigger kids, they are able to take bigger livers from adults; they can take part of a liver from adults and things like that, but Addison's donor probably will have to be a child, and that's been the hardest part," said Tendick, of Children's Mercy.
That weighs heavily on Addison's parents. They wish someone else wouldn't have to suffer the loss of a child in order to give their daughter new life.
With tears in her eyes, Shawna recalled meeting a family whose child was going to have heart surgery at Children's Mercy. Shawna had wished the family well before the surgery. Later she learned that child died a couple days after the surgery. The family made sure to tell Shawna that they had donated their child's organs.
"I think that's one of the hardest things. It's a selfless decision that a parent has to make, and I can't imagine being on the other side of that," Shawna said.
Despite the illness, Addison manages to laugh and play.
"She's adorable, just a little ham," Tendick said. "She's is just the happiest little baby that I think I've ever seen. She's touched my heart in a way not all your patients do, and it just has been awesome seeing her grow up during the past year because now she's just got this little personality."
The blue-eyed, strawberry-blonde also has a cute pink smile that shows four teeth - two on top and two on bottom. She also likes to doll up by wearing pretties in her hair or having her tiny toenails painted.
"It was so funny when I was getting ready to paint my toenails and she was screaming at me and holding her foot out because she wanted me to paint her toenails," Shawna said.
Her new word is "mine."
Shawna said she especially likes to use the word with her 4-year-old brother, Cameron. At first, her brother had a tough time dealing with his sister's required attention.
"He had a lot of acting out at first, and then it got better," Shawna said.
Now, Cameron seems to understand his sister's condition and has offered his liver to her.
"She's very sick," he said. "She needs a new liver to grow, walk and talk like me."
There's no telling how long Addison can survive without a transplant, but Tendick doesn't think she could survive another year.
"Our goal once we start the evaluation process is to transplant them before they get really sick and have to be hospitalized," she said.
If Addison were hospitalized, she would be placed at the top of the list for a liver transplant, which is the only definitive cure for biliary atresia.
There are risks.
"It's not a surgery that has a 100 percent survival rate," Tendick said. "It's a big surgery, but what we tell the families is that you are giving your child an opportunity to live a long life.
"I think that there's a misconception, that some people think a liver transplant is a cure, and it's not. It is trading one liver disease for another, but it's a liver disease that they will be able to live a long, full life with."
The new disease is the possibility that her body might reject the new liver. The one-year survival rate for liver transplants at Children's Mercy is about 95 percent, which is higher than the national average of 85 percent for children Addison's age. The hospital performed five liver transplants last year and 68 during the past decade.
Addison's father, Jeffrey, said they worry about the risks but try not to dwell on it.
"They say it's a 95 percent survival rate. That's good. I am not going to worry too much about 5 percent. We have one of the best doctors in the region," he said.
Finances are tight. Shawna expected to go back to working full-time at Pioneer Ridge Retirement Community six weeks after having Addison but quit her job to take care of her daughter. In August, she went back to working part-time to help make ends meet.
Meanwhile, Jeffrey lost his full-time job last year and has struggled to keep a job since then. He believes he lost the job because of the time he took off to care for his children. He recently injured his back, which hasn't helped matters.
"It all falls in our lap at the same time," he said. "Getting Social Security is pretty much what is keeping us going."
They receive Medicaid that pays for most of Addison's medical expenses.
Transportation also has been a concern. They have two cars that barely get them around Lawrence, so they borrow Jeffrey's mother's car for trips to Children's Mercy.
Despite the situation, they remain positive.
"We've been together through the ups and downs and back and forth, but we're hanging in there. We have two beautiful babies," Jeffrey said.
Tendick, who has taken calls from Shawna in the middle of the night, understands that the family's situation is tough.
"The waiting is the hardest part for them," she said, "when the months go by and they see their kid is getting more yellow and we have to add more medications and things like that. I think that's the hardest part for them. And I think there's a certain fear that's involved with not knowing when the call is going to come. So, that's definitely the hardest part."
Once the call comes and Addison gets a liver, Tendick predicts a full recovery.
"I think Shawna is going to have her hands full after transplant," she said. "Because when that baby gets a good liver, she's going to take off."