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Monday, December 13, 1999

Abilene couple lead battle against rare disease
By SIDNEY SCHUHMANN
Staff Writer

Sean and Evy Wright knew something was seriously wrong when they received a phone call from their doctor the day after Christmas.

The doctor confirmed their fears.

Their unborn child had been diagnosed with Potter’s Syndrome, a disease that describes the lack of or malformation of infant kidneys. Potter’s affects one in every 10,000 infants.

The disease was discovered after Evy’s 20-week checkup.

“They told us it was a freak thing that happened,” Evy said.

Another ultrasound in January confirmed the diagnosis.

The prognosis for the baby’s life wasn’t good. Doctors said the infant probably wouldn’t live more than three minutes after birth.

“They highly encouraged us to have an abortion,” Evy said. “But it was never an option for us.”

The couple, who married in 1994, was living in Michigan at the time where Sean, an airman stationed at K.I. Sawyer Air Force Base.

At first the couple thought their infant could simply have a kidney transplant. But the prognosis for survival was too low. Potter’s Syndrome affects more than the kidneys.

If an infant has no kidneys or they are malformed, the fluid needed to develop the lungs can’t be produced, so underdeveloped lungs result. Also, the infant is so tightly packed in the womb that the limbs can’t develop properly and sometimes they are born with physical deformities such as wrinkled skin, a short neck and a flattened nose.

After they learned their child had Potter’s, the Wrights tried researching the disease, but little information was available.

“I was on the phone with every kidney association I could find,” Evy said.

The couple came to terms with the fact that their child would not survive infancy. They chose a casket when Evy was eight months pregnant and made funeral plans.

On April 27, 1995, Evy gave birth to 5-pound son Aaron Jacob by Caesarean section.

Aaron had features characteristic of a Potter’s baby and was missing vital organs.

“To me, he seemed fine,” said Sean, now a senior airman at Dyess Air Force Base.

Aaron lived 57 minutes.

He was buried near family members in Michigan.

Losing Aaron prolonged Sean’s Air Force career.

The Air Force helped with funeral arrangements and personnel showed overwhelming support.

“We were ready to get out, and then we thought it’s best to stay in,” Sean said.

Sean and Evy kept three photo albums of Aaron’s pictures, and his framed photograph hangs in the family’s living room.

“I’ve kept everything,” Evy said. “I even have the little wash bucket.”

She said her family thought she was weird for keeping such momentos. But after meeting other mothers in support groups who have lost babies, she found she was not alone.

“Everyone else has that stuff, too,” she said.

The couple joined a support group in Michigan for people who have lost loved ones, and joined another one when they moved to Abilene in September 1995.

“There are so many moms who lose their babies,” Evy said. “It’s makes you realize you’re not the only one.”

Now the Wrights lead a national support group for other families who have lost children to Potter’s Syndrome.

The couple’s address is listed on a Web site about Potter’s located at http://laran.waisman.wisc.edu/fv/www/LIB_PTTR.HTM.

The Wrights want to start their own Potter’s Web site.

“Hopefully, when parents go on the Internet, they can find my name and get the info they need,” she said. “It’s increased the multitudes of people who have gotten in contact with us.”

The couple mails a newsletter twice a year and sends information packets to people who request more information about Potter’s.

They mail everything at no charge, which is costly and time consuming, though they do receive some donations.

The Wrights often get calls from all over the world from doctors, nurses, families and even universities requesting information about Potter’s.

Sometimes women whose babies have been diagnosed with Potter’s stay in contact with Evy throughout their pregnancy.

“Most of the moms I’m close to, though I’ve never met them in my life,” Evy said.

The couple tries to match families expecting a Potter’s baby with families who have already delivered an infant with the disease so they can offer each other emotional support.

Evy said some women have abortions when they discover their unborn infants have this disease, especially when they are told their children will not survive more than a few minutes after birth.

But when Evy tells parents that Aaron lived for 57 minutes, it changes people’s minds about having abortions.

“Most parents will carry the baby to have it for an hour,” she said.

The disease was named after Dr. Edith Potter, who first described the condition in 1946.

The majority of babies who suffer from Potter’s are boys. Evy said researchers think it might have something to do with the Y chromosome.

Little research has been done since the 1960s, and the Wrights hope that will change someday.

The Wrights allowed an autopsy to be performed on Aaron so doctors could gather more information about Potter’s.

For the Wrights, who both underwent testing and questioned their families, the disease was not genetic.

But other families haven’t been as lucky. Evy said one woman had three children with Potter’s before doctors confirmed it was genetic, and the couple stopped having children.

Evy and Sean were able to have a successful pregnancy with their second child, Dallas, 2.

Dallas knows about his older brother, and often asks his parents where he is.

Evy said they try not to tell him Aaron was sick, but that he had a disease and is in heaven.

Evy is now studying to be a nurse at Texas State Technical College in Sweetwater.

Part of the reason Evy said she decided to become a nurse was her experience in the hospital with Aaron.

The couple said they are content with their son Dallas and do not plan to have anymore children.

“And I’m ready to go work,” Evy added.

Sidney Schuhmann can be reached at schuhmanns@abinews.com or (915) 676-6721.

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