Advertisement

Second chances

Addison awaits transplant, better life

16-month-old Lawrence resident suffering from rare liver disorder

One-year-old Addison Whitenight has biliary atresia and has been on a liver transplant list since May 2007. During a weekly checkup in January at Lawrence Family Practice Center, she reaches for a door handle with her mother, Shawna Davis, at her feet.

One-year-old Addison Whitenight has biliary atresia and has been on a liver transplant list since May 2007. During a weekly checkup in January at Lawrence Family Practice Center, she reaches for a door handle with her mother, Shawna Davis, at her feet.

February 13, 2008

<strong>Editor's note:</strong> Three Lawrence families share one common bond - they encourage others to be organ and tissue donors. This is the first story in a three-part series on organ donations.

Advertisement

Second Chances: Addison Whitenight

Sixteen-month-old Addison Whitenight has been on a liver transplant list since May 2007. Her mother Shawna Davis talks about her daughter. Enlarge video

Second Chances: Addison's story

Life is a waiting game for one Lawrence family wondering every day if they'll get the call that will save their 16-month-old daughter's life. Over the next few nights we'll introduce you to three Lawrence families with one common bond: they all know firsthand the importance of organ donation. We start tonight with Addison's story. Enlarge video

Second Chances

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

Are you an organ donor?

Yes, although I haven’t donated one yet. But I would donate one if I wasn’t using it.

More responses

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."

Comments

vhawk 6 years, 10 months ago

My prayers are with this family and all of the others who have to deal with situations like these. I encourage everyone to be donors, if you do pass away, you won't need them, so please give someone else the opportunity to live a happy and healthy life.

Christine Pennewell Davis 6 years, 10 months ago

hold on shawna baby addison is love by us all, you and tessa should get together and hang out then you both have friend support.

preebo 6 years, 10 months ago

The picture on the Front Page rips out my soul. Young Addison looks a little like my daughter Abigail. I can't imagine how her parents feel. If I were in their shoes I would be completely disfunctional and useless in every other aspect of my life. Her story is probably not that rare, that being said, I am proud to be a donor. If more of us could make that decision we could minimize these heart wrenching stories. I wish this family well. God bless. My family and I will pray for yours.

Linda Aikins 6 years, 10 months ago

Addison, you are a beautiful little girl. I will pray that you get your transplant very soon.

I also am very proud to be a donor, as is my hubby. Take whatever you can use!

Kristen Murphy 6 years, 10 months ago

Praying for this family and the family of the future donor. I am very proud to say I'm a donor too. I hope one day my organs can help others.

Jennifer Alexander 6 years, 10 months ago

I wonder if either of her parents could donate part of their liver? Sounds like if the blood types match, it is a possibility.

http://healthjournal.upmc.com/0705/LivingDonors.htm

fisherwoman43 6 years, 10 months ago

Unfortunately at Childrens Mercy in K.C. they do not do split liver transplants. That is why she is going to be hard to transplant. They can only take a liver that is 5 times her weight. So with her weighing only 15 lbs., that means she can only take a liver that is 75# or less. Addison has a rare blood type, that her mom and I (Grandmother) both have, and I would give her my liver in a heartbeat, but can't. Thank you all for you prayers and well-wishes..She is our angel and little fighter.

PrincessConsuelaBananaHammock 6 years, 10 months ago

As a mother myself I can not imagine what this family is dealing with. We will send up lots of prayers for your family and for little Addison. We are commited to being organ donors - No need to take them with us to Heaven - Heaven knows there are people who need them here - and we had a situation with very close friends of ours who lost their young child very tragically. I know one thing that continues to bring them comfort to this day (almost 2 years later) is knowing that they donated all of their child's organs and that even through their loss other families were able to enjoy more time with their children.

raggie6070 6 years, 10 months ago

Daveundis, Are you serious?? You would feel very differently if this was your baby in this situation. So you mean to tell me that "organ donors only" will get the organs?? SO how do you tell this to the family of a baby? How can all of you sit here and talk about something you know nothing about. Have you been put into a situation where your BABY, NEWBORN needs a life saving transplant. I think if you were that you would feel differently about this subject. And to all of you that think that they will kill you before you are dead for your organs, you are ignorant! The organ recovery team is a totally seperate team that comes in and asks you about your family members organs AFTER you are declared brain dead. I encourage all of you to PLEASE PLEASE look up these facts for yourself. Dont listen to someone spouting verbal garbage from thier mouth when they dont even know what they are talking about. And yes, I have been on this side of things and never really thought about what being an organ donor is. I have ALWAYS been an organ donor myself, it just has a very special meaning in my heart. Today there is over 98,000 people on the waiting list. Moms,Dads,Wifes,Husbands,Brothers, Sisters,Baby girls, Baby boys. Lives are depending on you! "Dont take your organs to heaven, Heaven knows we need them here"

simplykristib 6 years, 10 months ago

I hope that Addison gets the call soon! Lots of good thoughts and prayers going out to Addison and her family!

Commenting has been disabled for this item.