DATE: Sunday, March 30, 1997                TAG: 9703300084

SECTION: LOCAL                   PAGE: B1   EDITION: NORTH CAROLINA 

SOURCE: JEFFREY S. HAMPTON, CORRESPONDENT 

DATELINE: ELIZABETH CITY                    LENGTH:  115 lines

SPECIAL PROCEDURE HELPS BABY GIRLS BEAT THE ODDS

Kathy Benz thanked the Lord - as she does every day - for the squeals of her twin daughters as they frolicked on a plastic jungle gym.

A video of Disney's ``Jungle Book'' played loudly on the television set. The blonde girls, two weeks away from their second birthdays, fought briefly over a stack of cards. Toys littered the room. They were typical toddlers having fun and getting in trouble while Mom worked around the house.

Laughter. Noise. Crying. Incessant calls for Mommy.

Wonderful.

``I don't know how to describe it, but we pretty much know this was a miracle,'' Kathy Benz said.

While she was pregnant with Kara and Kolleen, she developed a rare condition called Twin to Twin Transfusion Syndrome. The babies had only a 10 percent to 20 percent chance of survival, and if they were born, they were likely to have a handicap, such as cerebral palsy.

Kathy Benz, 30, and her husband, Kory, 29, sat at the kitchen table recently recalling the despair they felt after a doctor first diagnosed the problem. She had been 19 weeks pregnant at the time.

``We cried all the way home,'' Kathy said. ``We went to our church and prayed our hearts out.''

The doctor asked them three times to terminate the pregnancy. He said the babies were almost surely going to die, and Kathy's life was also in danger. Many doctors are not aware of TTTS symptoms or current treatments, Kathy Benz said.

``I was pretty scared,'' she said. ``But even after the doctor told me about all those risks, I didn't care. I was not going to give up my babies without a fight. Termination was not an option.''

The chances of having identical twins are about four per 1,000 births nationally. About 15 percent of those, or 3,000 a year, develop TTTS, according to a pamphlet published by the TTTS Foundation. The condition occurs when identical twins share the same placenta and more blood flows to one baby than the other.

The baby receiving too much blood, called the recipient, develops problems similar to high blood pressure. It can die of heart failure.

The baby not receiving enough blood, called the donor, is anemic.

The babies themselves start out normal. The placenta is defective.

One of the great dangers of TTTS is the likelihood of premature birth. The recipient baby releases too much urine or amniotic fluid, overfilling its sac. The pressure rises in the mother's womb and can cause the water to break too soon.

Two days after the devastating news, Kathy Benz was in Chesapeake when she mistakenly thought her water had broken. She rushed to Sentara Norfolk General Hospital, where Dr. Peter Heyl examined her.

Heyl, a perinatologist with the Eastern Virginia Medical School in the Department of Maternal Fetal Medicine, surprised the couple by telling them they had two treatment options.

``As soon as I had options I felt better,'' said Kory Benz, a C-130 pilot in the Coast Guard.

In one procedure, called serial amniocentesis, the doctor withdraws the extra amniotic fluid created by the recipient twin. The process decreases the chance of premature birth and helps stabilize the unbalanced blood flow.

In the other procedure, called in-utero laser surgery, surgeons close off the shared blood vessels. Only two doctors in the United States perform that surgery. One is in Chicago and the other is in Tampa, Fla.

Kory preferred the surgery, but Kathy wanted the fluid withdrawn.

``I felt this, call it what you will, this inner voice to go with serial amniocentesis,'' she said.

Since her water could break at any moment, decision time was short. Heyl had given the couple their choices on a Tuesday in January 1995. By Friday morning, they called with their decision. Dr. Alfred Abuhamed at Sentara Norfolk General Hospital, who would perform the serial amniocentesis, told her to come that afternoon.

Abuhamed removed 2,700 cubic centimeters of amniotic fluid, nine times the normal amount. When Kathy entered the hospital, she was six months pregnant and looked like she was ready to deliver. After the doctor removed the fluid, she asked the doctor if her twins were still there. ``I was like, `Where are they?' ''

Over the next few weeks, Kathy had fluid withdrawn four times a week. She was limited to strict bed rest.

The goal was to get Kathy to at least 30 weeks before delivering the babies.

``Anything after that was gravy,'' Kathy said. A normal pregnancy lasts about 40 weeks. She delivered at 33 1/2 weeks, on April 13, 1995. Kara was born at 11:31 a.m. at 4 pounds 3 ounces, and Kolleen was born at 11:33 a.m. at 2 pounds 13 ounces.

Kolleen had to receive a teaspoon of blood, and Kara was placed on a breathing machine for 12 hours. Other than that, they were fine.

In two weeks they were all back home.

Informing parents and saving twins with TTTS is the mission of Mary Slaman-Forsythe of Ohio, who started the TTTS Foundation in 1992. One of Slaman-Forsythe's twins died in 1989 because of TTTS. Many TTTS pregnancies have been terminated unnecessarily, she said, and the condition never reported.

``They do not track the syndrome very well,'' said Slaman-Forsythe from the Foundation's headquarters in Bay Village, Ohio. She believes the roughly 3,000 TTTS cases a year do not reflect how prevalent the disease is.

``We believe those numbers are low,'' Slaman-Forsythe said. ``We get about eight to 10 calls a day.''

She said every woman pregnant with twins should have an ultrasound and see a perinatologist weekly.

``Most of our phone calls come around 18 weeks (into the pregnancy),'' she said. ``They have just been diagnosed. We react to that phone call within 24 hours.''

The foundation offers financial help and sends information about the condition and options for treatment - treatment Kathy and Kory were relieved to receive.

``We are thrilled,'' said Kathy as she tried to get her twins to sit on the jungle gym for photos. ``But we are a little busy.'' Even with Kory home, it was a handful to keep up with Kara, Kolleen and 3-year-old Katie during playtime outdoors.

For information on TTTS or the Foundation call (216) 899-8887. The TTTS Foundation web address is (http:(AT)eagle.nest.boise.id.us(AT)projects(AT)ttts).

The e-mail address is (tttsfound(AT)aol.com). ILLUSTRATION: Color photo by JEFFREY S. HAMPTON, The Virginian-Pilot

Kory and Kathy Benz push their twin daughters...on the swings.

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