'I just want to have a normal life,' says teen on dialysis

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'I just want to have a normal life,' says teen on dialysis
Saturday, March 22, 2008
By Doug Dezotell

Shana Mosavi is like any 17-year-old girl.

She loves to talk on the phone with her friends, dreams of going to college and would love to get married and have a family one day.

But unlike most teenage girls, Shana was born with a rare physical disorder, Vater Syndrome -- and doctors didn't expect her to live beyond age 5.

"I was supposed to die when I was 5, so I'm very lucky to live to age 17," Shana said. "But I don't think its time for me to die quite yet. I still have dreams and goals I would like to achieve. Although I can't have a child myself because my ovaries and uterus have been removed, I would like to adopt and have a family one day. I have a beautiful niece and nephew that I want to be able to watch grow up."

If Shana is going to live to see her dreams realized, she will need a kidney transplant.

Shana was born with only one working kidney, which was not fully functioning and was removed earlier this year. The other kidney was full of cysts and soon disintegrated.

Vater Syndrome, or VACTERL Association, is characterized by an unusual association of specific birth defects or abnormalities. Not all children born with this association have the exact same level of abnormality.

Her esophagus was attached to the left lung. When she was a week old doctors did surgery to attach the esophagus properly, but she kept experiencing reflux and was in and out of the hospital repeatedly.

Shana was born without an anus or vagina, and the day after she was born doctors put in a colostomy bag. Over the years she has had to have numerous reconstructive surgeries.

When she was two, she went through renal failure and her one kidney quit functioning. She has been on and off dialysis over the years. But, from ages 10 to 16, her kidney seemed to function okay.

At the beginning of this year, her kidney had to be removed. Doctors found a cyst behind the kidney the size of a football. They couldn't take it out, so they filleted it and drained it, and then were finally able to remove the cyst.

She is now functioning without a kidney and is on dialysis throughout the week at the Fresenius Dialysis Center in Tullahoma.

Shana lives with her aunt and uncle, Susie and Wesley Bearden, in Unionville. Her aunt is able to take her to her many doctors' visits in Nashville and back and forth to dialysis.

Her mother, Donna Pack, lives in Tullahoma. Pack said that she had a very troubled pregnancy with Shana.

"When I was pregnant, I was living in Huntsville, Ala.," Pack said. "I had an ultra-sound done and doctors saw a blockage in Shana's abdomen, and they found a large cyst on the umbilical cord. I was back and forth constantly between Huntsville and Birmingham to have doctors check me out."

None of Shana's family are viable kidney donors. Shana and her mother both have type O blood, but even though her mother has the right blood type, she's had gestational diabetes during her pregnancies and cannot be a donor.

No other family members have the right blood type, and Shana is praying that someone who is a match would be willing to donate a kidney.

"I just want to live a normal life," Shana said. "I've never been completely normal so I don't know how it feels, but I know it has to feel better than being tired and sick everyday."

Anyone interested in finding out how to donate a kidney can contact Shana's social worker, Verna Johnson, at Vanderbilt Medical Center in Nashville. Johnson can be reached at (615) 936-0695. Or you can contact Pack at (931) 205-9284.

http://www.t-g.com/story/1319934.html