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SPINA BIFIDA



Published: Mon, January 21, 2002 @ 12:00 a.m.



By WILLIAM K. ALCORN

VINDICATOR HEALTH WRITER

NEW MIDDLETOWN -- "I'm afraid the news is not good," were the numbing words from the doctor who told Lorie and Dan Barber their unborn daughter has spina bifida. It changed their lives.

"Dan was holding my hand. I just started crying," said Lorie, who is 22 weeks pregnant.

In the month since, the Barbers have experienced the gamut of emotions and reactions: Shock, anger, sorrow, mourning, acceptance and finally action.

"This Lorie laughs at the old Lorie," she said.

Lorie, 34, and Dan, 33, say their unborn daughter has already had a positive effect on their lives, despite their knowledge that she has spina bifida and could have serious disabilities when she is born.

"Sure, I don't want this disability. We knew abortion was an option. But we 100 percent want this baby, and she has already blessed us," Lorie said.

Family and friends and even complete strangers have offered to help. "The kindness and generosity of people is amazing," Dan said.

What it is: Spina bifida is a congenital condition in which part of the spinal cord protrudes through an opening in the spinal column. Constant leakage of spinal fluid can draw the brain into the top of the spinal cord. Hydrocephalus, or water on the brain, can occur, causing a multitude of neurological problems from paralysis to developmental and learning disabilities.

After learning of their daughter's spina bifida, Lorie said she was at first angry with God.

"'Why us?' I asked. And then I began to ask, 'Why not us?'" she said.

"It was hard to accept that we didn't have a healthy child. We mourned the loss of a healthy child," Dan said.

"Your values are severely tested. I have already developed total respect for people raising handicapped children," he said.

The Barbers now display acceptance and determination.

Operation: They made arrangements for fetal surgery, a relatively new procedure for spina bifida, at the Vanderbilt University Medical Center in Tennessee. Vanderbilt is one of only a few places in the United States where the surgery is done. Drs. Joseph P. Bruner and Noel B. Tulipan pioneered the procedure at Vanderbilt, where the most such operations in the United states, 142, had been done as of Dec. 15, 2001.

Although the $35,000 procedure is not considered experimental, it is relatively unknown, and Lorie thinks she is the first in the area to have it. She said she is the first in her insurance group to have the surgery.

Spreading the word: The Barbers said one of the main reasons for telling their story is to make women and even doctors aware of the fetal surgery option.

Lorie said they had heard about fetal surgery because she is in the news business -- a former producer and now part-time program director at WKBN-TV -- and Dan is in the medical field, chief perfusionist at Forum Health. A perfusionist operates the heart-lung machine during heart operations.

The same day they got the news, they spent several hours on the Internet finding everything they could on spina bifida and the surgery. They met with the Spina Bifida Association Tri-County Chapter to learn what to expect when their baby is born.

The Barbers left for Vanderbilt on Thursday; the surgery is scheduled for Wednesday. The operation was scheduled as quickly as possible because doctors think the sooner they restore the normal circulation of cerebrospinal fluid to the brain, which is what the surgery aims to accomplish, the greater the reduction of potential disability.

Risks: The Barbers say that they understand their daughter has already lost some neurological functions and that there are risks involved in the surgery for Lorie and the baby.

The risks include blood loss, infection and pre-term labor and delivery, hospital officials said. Between their arrival and the surgery, the Barbers will meet with hospital counseling teams to ensure that the couple understands the potential risks and benefits. They can change their minds right up to the last minute, Vanderbilt officials said.

"We're willing to take the risk," Lorie said.

The Barbers think the operation will eliminate or keep to a minimum surgeries for brain shunts that are prevalent in most spina bifida children. A shunt is a drain that prevents fluid buildup in the brain. Spina bifida kids may need multiple brain operations to replace shunts as they are outgrown or fail for other reasons.

Finding out: Discovery that the Barbers' daughter has spina bifida was unusual in itself.

The Barbers have two healthy children, a son, Zachary, 2, and a daughter, Taylor, 14 months. During her pregnancy with both, Lorie declined the test for spina bifida.

She had a different doctor for this pregnancy, and "he sort of didn't ask me. He just sent the nurse in to draw blood," Lorie said.

"I almost said no, but something said just do it," she said. The results came back positive, but even then the Barbers weren't too worried because the doctor assured them most positive results are a false alarm.

Lorie had an ultrasound performed, and she said the doctor had been chatting and joking. But after he saw the ultrasound he uttered the sentence burned in Lorie's mind: "I'm afraid the news is not good."

The Barbers intend to choose a name for their daughter before Wednesday's surgery because "in a sense" she will be born then, they said. They know her middle name will be Eva after Lorie's grandmother, whose funeral was the day after they learned about the spina bifida. They are leaning toward Nicole as a first name. Nicole means victory, and Eva means life.

Procedure: During the surgery, a Caesareanlike incision is used to reach the uterus; an incision is made in the uterus, and the amniotic fluid is drained. The fetus is positioned so doctors can place the spinal cord back in the spinal canal. The cord is then covered with its normal membranous sheath, and the incision in the fetus is stitched up. The spina bifida repair normally takes 20 to 30 minutes. Before the last stitch is placed in the uterus, the amniotic fluid is replaced.

If all goes well, Lorie will be discharged three or four days after the surgery and come home to complete bed rest until birth occurs. She will be given constant medication to prevent contractions, triggered by the surgery, until the child is born.

The Barbers hope the birth will not occur until at least the 32nd week of pregnancy, which would be Palm Sunday. The birth will be at Forum Health Northside Medical Center, and any special after-care will be at Tod Children's Hospital.

Family and friends will help the Barbers during that period by watching kids, cleaning house, cooking meals, shopping for groceries, and the myriad other things Lorie would normally do.

Costs: Although insurance will cover the operation, there are other out-of-pocket expenses that will amount to several thousand dollars. The Barber Baby Fund has been established at Sky Bank for anyone who wants to donate.

Lorie said any money that isn't needed would be donated to the Spina Bifida Association or to another woman who wants to make the trip to Tennessee and needs help.

Lori and Dan are 1986 graduates of Boardman High School. Lorie graduated from Youngstown State University with a bachelor of arts degree in telecommunications. They are members of St. Paul the Apostle Catholic Church.

Lorie's parents are Jack and Charlotte Quigley, and Dan's parents are Harry and Erma Barber. Both families live in Boardman.

alcorn@vindy.com




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