Trip of thousands of miles on the strength of hope

Friends of African parents advised them to give up

May 15, 2002|By Gail Gibson and John Murphy | Gail Gibson and John Murphy,SUN STAFF

The first sign that anything was wrong came at home, during labor, when Margret Onziga's baby would not come.

Her family rushed her to a hospital in Aru, a village in the northeastern corner of the Democratic Republic of Congo, where doctors said there was not one baby, but twins, and then told Onziga the sad news:

The babies, both girls, were joined at the chest. Delivering them would require an emergency Caesarean section.

Saving them would require a kind of miracle, in a corner of the world marked less by hope than by bloody civil war, deep poverty and death at an early age.

"At first, after the babies were out, there were people who say, `There are sad things like this that happen,'" the babies' father, Gordon Onziga, said yesterday. "They say, `Maybe they will live, but only a few days.'"

The Onzigas chose to hope and set out last fall on a long journey to save the tiny babies that took them from Congo across the border to hospitals in Uganda and eventually to Baltimore, where last month doctors at the University of Maryland successfully separated now 6 1/2 -month-old Christine and Loice during 12 hours of surgery.

At their public debut yesterday, wearing red and yellow rompers and each with a head of curly dark hair, the babies were a powerful testament to their parents' decision.

"Everybody here is so used to death. They believed that the girls would die," said Dr. Margaret Nakakeeto, a pediatric specialist who evaluated the twins at Mulago Hospital in Uganda's capital, Kampala.

"The people back home were talking to the father and telling him, `It's bad luck for you. Why don't you give up?'"

The Onzigas refused. Shortly after the twins' arrival in late October, their journey began.

When doctors in Aru realized they would be unable to care for the girls, they transported the babies across the border to Arua, a tobacco farming community in Uganda, near Gordon Onziga's 6-acre farm.

Arua, a town of 25,000, sits at the crossroads of two of Africa's bloodiest civil wars - in Congo and Sudan, just to the north. The Onzigas sought treatment at Arua Hospital, a 324-bed facility that treats about 250,000 patients each year for ailments ranging from malaria to AIDS to guinea worm.

Survival in question

"I was not sure if they would survive," said Dr. Richard Amandu, who first examined the girls upon their arrival.

Amandu spoke during a telephone interview yesterday from the hospital's trauma ward, where he had spent the day mending broken legs, a common injury during Uganda's rainy season when children fall from trees while picking mangoes.

Broken bones are one thing. Amandu could do little for the Onziga twins but offer support to their parents as word spread in the small town about the conjoined twins and residents flocked to the hospital to see them.

Amandu did not know what organs the twins might share or whether separation was possible. But he did know that his poor hospital would not be able to handle the case.

When the babies were about 2 weeks old, the doctors in Arua gave the Onzigas advice: go to Kampala. Uganda's capital city is home to Mulago Hospital, a sprawling, 1,500-bed facility that provides the country's most advanced care.

Financing the trip

Gordon Onziga went home to the village of Leiko, where he raises potatoes and peanuts and rice. To raise money for the seven-hour bus trip over bumpy dirt roads to Kampala, he sold his bicycle, the family's only means of transportation, for 90,000 Ugandan shillings, about $35.

He left the couple's other child, 3-year-old Noelle, in the care of his parents.

At Mulago Hospital, the twins came under the care of Nakakeeto. She evaluated the twins, and she thought they could be successfully separated. But doing so would require help from outside the country.

In Uganda, doctors and patients must face the limitations of medical care every day. Half the country's population of 23 million lives more than 3 miles from the closest medical clinic; there is one doctor for every 18,000 residents. Life expectancy is less than 40 years.

Most babies are born at home, as Margret Onziga had planned. Experts say the rate of women dying in childbirth in Uganda is about 800 per 100,000 births, compared with less than 10 per 100,000 births in the United States.

Medical procedures involving a 35-person medical team - like the one that separated the babies Christine and Loice - are unheard of.

Outside help

For the Onziga twins, outside help came first from Dr. Cindy Howard, a clinical assistant professor of pediatrics at the University of Maryland School of Medicine, who was working in the Mulago Hospital as part of an overseas medical exchange program.

Howard has worked as a pediatrician for 24 years, but this was the first time she had encountered a set of conjoined twins.

The Onziga babies seemed so healthy, she thought a separation procedure was likely to be successful. But she did not want to offer the parents false hope that both girls would survive.

"It was a difficult decision for all of us. We didn't want to make any promises that we couldn't keep," Howard said. "But finally, we couldn't just leave them to go back to the village."

Hoping for home

Gordon and Margret, Christina and Loice do expect to return to their village in Uganda this fall, when the twins are stronger.

The parents say they still are amazed to see their daughters apart, to be able to hold each baby on her own and have again the normal hopes of parenthood - that the girls will be healthy, and go to school, and live long lives.

"Some Ugandans would say they are too poor to worry about saving lives of unusual cases like the twins," Nakakeeto said by telephone yesterday from Kampala.

"When the village sees the twins are healthy, they will believe that things can be done, and maybe we can improve these things so we can save people without going to the United States."

Sun staff writer Diana Sugg contributed to this article.

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