GRATEFUL TO BE ALIVE, MORE GRATEFUL, STILL, FOR MOTHERHOOD

Bracha Witonsky, 29, spends time with Shina, one of her daughters, during a hospital stay. Witonsky has cystic fibrosis, a disease that claimed her sister at age 16. Neither of her daughters has the affliction.

BY NEIL SAMSON KATZ
SPECIAL TO THE STAR LEDGER
PUBLISHED MAY 14, 2006
Star Ledger Link

NEW YORK — For Bracha Witonsky it wasn’t easy growing up with a sick sister who was fighting cystic fibrosis.

Shulamis got all the attention. Every day the family gave her physical therapy, they injected the intravenous antibiotics she needed to clear the thick mucus from her lungs and they watched helplessly as she lost pound after pound. When Shalumis died at 16, perhaps the hardest thing for 8-year-old Bracha was knowing she was sick, too.

"When my sister died, I felt when I would reach 16, I would die too," Witonsky said.

Today, Witonsky is 29 years old and living in Marine Park, Brooklyn. She even has been healthy enough to fulfill her lifelong dream “to have a baby girl and to be able to name her after my sister."

"That was my dream for life," Witonsky said. "Anything more than that was extra for me.”

This Mother’s Day Witonsky has plenty to be thankful for, notably her two baby girls — 6-year-old Shulamis Zahava (Hebrew for complete gold) and 5-year-old Shina. Neither has the deadly genetic disorder that afflicts Bacha.

Cystic fibrosis, a disease that attacks the lungs, pancreas and digestive system, has for ages been known as a childhood affliction because few patients lived past their teens. But over the past three decades, new medicines and better care have helped children with cystic fibrosis become adults. And increasingly women like Bracha are seeking out a new and unexpected challenge: motherhood.

"Now we have more and more patients living into their adult years," said Dr. Robert Zanni, a cystic fibrosis specialist at Monmouth Medical Center in Long Branch. "They don’t spend as much time in the hospital. They are going to school, getting jobs, having a family life. It’s a major difference from 30 years ago."

Indeed, half of all people with cystic fibrosis now live past 37, according to the Cystic Fibrosis Foundation, the primary advocacy group for the disease. Many patients live far longer, some into their 60s.

Still, motherhood remains a fairly exclusive club among those with the disease. There were only 107 births in 2004, according to the Cystic Fibrosis Foundation’s most recent numbers. Eight were in New York and New Jersey.

Though 10 million Americans are carriers for the disease, only an estimated 30,000 people have full blown cystic fibrosis. Patients have two defective genes that cause thick bacteria-trapping mucus to build inside the lungs and create constant infections. Over time, those infections degrade the lungs, making breathing difficult and eventually impossible.

Mucus build up also prevents the pancreas from producing enzymes vital for absorbing food. Many patients become frighteningly thin. And while there still is no cure, with powerful antibiotics, careful nutrition, and aggressive physical therapy, doctors are keeping patients healthy far longer.

"These women, when they were born, they were told they would die by the time they were 18 years old. Now they are told that the average age is 37. They are very hopeful that the number will continue to rise and they will beat the odds," said Dr. Moira Aitken, director of the adult cystic fibrosis program at the Washington University Medical Center in Seattle. "My job is to make these women live as long as they possibly can and have all the joys in life that they possibly can. And so far so good. These children bring them incredible joy."

'A TOTAL MIRACLE'

Motherhood puts new stresses on any woman. For someone with cystic fibrosis, it also means lung infections can get out control and they may have trouble gaining weight. The antibiotics used to treat their infections might also harm their fetuses. But many doctors have been able to keep mother and babies healthy, and genetic testing makes it nearly impossible for mothers to pass the disease to their children.

"Ten years ago we were concerned that it would be a real drain on them and they would lose lung function and couldn’t recover," Zanni said. "But I think we are in a new era now. They are being successful as mothers."

That doesn’t mean pregnancies are always easy.

Bracha spent weeks in the hospital throughout her first pregnancy and delivered Shulamis eight weeks early, a common problem among cystic fibrosis moms. Shulamis was kept in the intensive care unit and went into crisis days later, unable to breath.

"I ran under my blanket and started crying," Bracha said. "I thought she had cystic fibrosis or something was really wrong with her."

Shulamis did not have cystic fibrosis, but there was a hole in each of her tiny lungs. The doctors said Shulamis had seven months to live if she made it at all, according to Bracha. But instead she went home in two and a half weeks and has been healthy since.

"It was a total miracle," Bracha said. "All of my family prayed a whole book of psalms every day."

Many mothers with cystic fibrosis have an easier time of it.

Melissa Shiffman, a 32-year-old with a blue-eyed, baby girl, lives on Manhattan’s Lower East Side. She also had a sibling who died of the disease when she was a child. Though Shiffman has had 11 surgeries to remove blockages from her nose and, like many other cystic fibrosis patients, requires daily physical therapy and antibiotics, she always felt healthy enough to tackle pregnancy.

"It never occurred to me that I wouldn’t give birth," Shiffman said. "My doctors freaked out at first when I told them I wanted to have a child. We had a very long talk about it. They were very clear on the pros and cons, well not the pros just the cons."

Luckily, her doctors’ concerns proved largely unfounded. Though she delivered baby Chloe two and a half weeks early, both mother and daughter’s health held firm.

"I loved it," Shiffman said while laughing. "There were a couple of times I was nervous because that is my nature, but for the most part it was just amazing. Just to feel the progression of it. Going to the doctor at seven weeks and hearing a heartbeat is an overwhelming feeling. You don’t realize it until that moment, watching the baby grow, feeling it kick, having her hiccup, talking, singing, and dancing. I was really excited and nervous, but mostly excited."

A DIFFICULT CHOICE


Melissa Shiffman, a 32-year-old mother with cystic fibrosis plays with her infant daughter, Chloe.

On a recent sunny afternoon, Shiffman rolled around the carpet with her 1-year-old daughter. Chloe put on a fashion show with mommy’s hat, a big pink floppy number, and wild sunglasses to match. Chloe accessorized the ensemble with three different wristwatches while mom beamed a thousand watt smile.

Shiffman is now considering her second child but she also has doubts. "I’m worried that I’m being selfish and playing Russian roulette with (husband) Steve and Chloe’s future because I want two kids," she wrote in an e-mail. "There is no guarantee that my health would be jeopardized at all, but there are no guarantees that it wouldn’t."

Counseling young women about the risks of motherhood is tough, according to doctors who treat the disorder.

"CF is still a life shortening disease," said Dr. Mark Tonelli, a medical ethicist and cystic fibrosis specialist at the Washington University Medical Center. "We have to talk about the possibility that they may not be alive in 20 years. They need to acknowledge there is a significant risk that they may not be there to raise their children."

But many cystic fibrosis patients, like Erin McNalty, a 31-year-old social worker from Yonkers, N.Y., who is thirty weeks pregnant with twins, face that question head on.

"When I was born, the average age to live was 13. In my teenage years I thought I would never go to college. Then in college I though I would never get married. So I am always waiting for another shoe to drop," she said, adding that "if my health starts to decline I will be able to teach my kids who I was. And they will be strong enough to go on."

Despite the risks, many doctors remain optimistic about their patients becoming mothers.

"These are people that don’t take their children for granted, that’s for sure," Tonelli said. "And I think they understand better than the rest of us that each day is precious."

Linda Clark, a 57-year-old, crisis counselor, from Chehalis, W.A. knows better than most. Despite battling cystic fibrosis she has two grown children and six young grandchildren.

“They are healthy beautiful children and very much a delight in my life,” Clark said. “They are such an encouragement and make me focus so much on being alive.”

“I am here for them and they are here for me and that is an awesome force.”

Neil Samson Katz is a freelance writer and photographer based in New York City. He may be reached at neil@neilkatzphoto.com.

GENDER AS A LIFE-AND-DEATH ISSUE

BY NEIL SAMSON KATZ
SPECIAL TO THE STAR-LEDGER
PUBLISHED MAY 7, 2006
Star Ledger Story Page 1
Star Ledger Story Page 2
Re-published by Washington Post

NEW DELHI — In a tight alleyway in East Delhi, Radhika Devi, a bashful mother of two girls, and Manjula Thomas, a health worker that cares for pregnant women, rush to an ultrasound clinic. Devi is five months pregnant and desperately wants to know the sex of her unborn child.

"It’s better if it’s a boy," she says, her hands shaking nervously. "If it’s a girl, we will get it aborted."

Radhika, her husband, Radheshyam, and their two daughters share a single room in the congested, mostly lower class neighborhood of Khichripur. Radheshyam brings home less than $2 a day as a bus driver - barely enough to put food on their table - and they worry about marrying off their two young daughters. "All girls’ parents must pay dowries," Radhika explains. "We will take loans and pay it back bit by bit. It might take up to a year’s time."

Though dowries are illegal in India, the law is widely ignored and the Devis fear a third daughter will send them over the edge financially.

Instead they hope for a son to one day provide for the family. He would fetch his own dowry upon marriage, take care of his parents as they grow old — India has no social security program — and carry on the family name.

In India’s male dominated society, especially the northwest, this is the logic that drives parents to abort half a million female fetuses each year, according to experts.

The practice, called female feticide, is responsible for at least 10 million female abortions since 1985, according to a controversial study published in the British medical journal, The Lancet, in January.

"All kinds of famines, epidemics and wars are nothing compared to this," said Dr. Punit Bedi, a gynecologist in New Delhi. "In some parts of India one in every five girls is being eliminated at the fetal stage.
"It is a genocidal situation."

Added Sabu George, a public health activist in New Delhi who has criticized feticide for more than 20 years: "There has been tremendous pressure on having small families and the small families are being created by eliminating girls. We are not dealing with son preference. We are dealing with daughter hatred. Our civilization wouldn’t have survived if it was hating girls the way it has in the last few decades."


In Kajampur, India, mother Jagdish Kaur and father Majit Singh proudly display their infant daughter, Jasdapp. Unlike much of India, where are an estimated half-million female fetuses are aborted every year, girls and boys have been born in equal numbers for several years in Kajampur, partly due to government efforts.


Abortion — legal in India since 1971 — originally was trumpeted as a way to control the country’s rapidly expanding population, now 1.1 billion people, making it the second most populous country in the world, behind China.

"It was understood that all programs (to control the population) were failing because people would not stop having children until they had at least two boys," Bedi said. "Even one was not considered enough in a country where you cannot ensure childhood survival beyond 60 percent."

In 1994, under pressure from a coalition of activists, the Indian government changed course, outlawing the use of ultrasound machines to reveal fetus gender. In 2002, the penalties were stiffened: up to three years in jail and a $230 fine for the first offense and five years imprisonment and $1,160 for the second.

Aborting a child because of its gender has never been legal, but experts said doctors still act with impunity.

"It’s a very low risk, high profile business," Bedi said. "Not only do the doctors make a lot of money, they are absolutely sure they will not be caught."

In Punjab, a male-dominated state with the most disparate gap between boys and girls in India, only one doctor has been convicted in the past four years of performing a sex-selective abortion, according to Dr. V.K. Goyal, a senior Punjabi health official. The convicted doctor’s medical license was suspended for five years and he was fined 400 rupees, around $10.

The Lancet study seemed to confirm that laws were not deterring families from sex selection. By analyzing national birth records and fertility histories from a 1998 Indian government survey of 1 million households, the study estimated at least 500,000 female fetuses in 1997 were aborted. Based on that one year, they came to the 10 million figure.

The study also found that families whose first child was a girl were 30 percent less likely overall to produce another girl. And if the mothers had at least a 10th grade education the gap was twice as large as that for illiterate mothers.

"Normally in public health the poor are worse off," said Prabhat Jha, an epidemiology professor at University of Toronto and lead author of the Lancet study. "But here we have the rich and educated that are more often performing sex selections. And that is entirely consistent with being able to afford and have access to ultrasound technology."

Indeed, the drive for male heirs has created an explosion in ultrasound clinics that can determine the sex of a fetus and medical practices that profit mostly from doing sex-selective abortions, activists said. A new ultrasound machine costs $5,000, a used one as little as $2,000 and banks eagerly provide loans, according to Bedi.

"Everybody bought an ultrasound machine. Just about anybody that could make out a girl or a boy bought a machine," Bedi said. "The machine pays for itself within three to six months. The amount of money to be made was so much."

Doctors collect anywhere from $80 to $230 for an ultrasound plus abortion package, according to health officials. Through precise numbers are hard to come by, experts estimate the business to be worth $100 to $200 million each year in India.
"I have never seen a qualified doctor starving," Bedi said.

In New Delhi, doctors offering to abort female fetuses are busted by television news channels on almost weekly basis. But few clinics are shut down, according to activists.

Devi, the mother seeking an ultrasound, was helped by Datamation, an Indian charity that sometimes helps news channels bust clinics that break the law.

Datamation paid for Devi’s ultrasound in return for letting a spy camera-armed health worker accompany her. But fearing a setup, Devi’s doctor would not reveal the gender of her fetus. Instead she said Devi could return for an abortion, according to Datamation.

But Devi wasn’t sure. She vowed to seek another ultrasound on her own.

IN THE COUNTRYSIDE

In the village of Chakli Sujait, where these children live, 34 boys have been born over the last six years, but only 19 girls.


The big business of feticide has moved well beyond India’s major cities, according to health officials. Take the rich, agricultural state of Punjab as an example.

When the state’s first ultrasound clinic opened in 1979 there were 925 girls for every 1,000 boys below the age 7, according to George. By 1991 it was 875, and by 2001 it had plummeted again, to 793, according to national census figures.

In Nawanshahr, a small farming district in central Punjab, a recent government survey revealed village after village had fewer than six girls for every 10 boys. In the tiny village of Nai Majara, a second grade class has 14 boys and only three girls. Last year the town produced less than five girls for every 10 boys, according to the survey.

On a recent visit to the quiet village of Chakli Sujait, the town’s midwife, Manjit Kaur, explained, "I know about every pregnant lady and no abortions are performed here." Earlier, however, the town’s health worker had quietly revealed the birth records for the past six years: 34 boys and 19 girls.


Despite the disparity in the number of births of boys and girls in Chakli Sujait, the town's midwife, Manjit Kaur, insists that no abortions are done here.


Experts warn not to draw conclusions from the small number of births found in Nawanshahr’s tiny hamlets. But the district’s own survey revealed parents across all of Nawanshahr managed to produce only 775 girls for every 1,000 boys over the past six years.

In the center of Nawanshahr, a row of private hospitals and ultrasound clinics have sprouted up to handle the demand for sex selections, according to local doctors. A sign outside each office reads, "Sex Selection and Female Feticide is Not Done Here." But according to Dr. Gurmaj Kaur Saini, a female gynecologist practicing for over 20 years in Nawanshahr, just the opposite is true.

"I don’t want to name. There are so many," she said.

According to her own records, Saini delivered 60 boys last year and only 35 girls. But Saini denied any wrongdoing and said mothers only will spend the extra money for a delivery in her clinic if they are already sure their child is a boy. Girls, she said, are delivered at home with less expensive but poorly equipped midwives.

As feticide spreads to rural areas like Nawanshahr it is becoming increasingly dangerous for pregnant women, according to Bedi. Ultrasound tests, which bounce sound waves off of a fetus, cannot accurately determine its gender until at least the 16th week of pregnancy and sometimes not until the 18th week. Often mothers go for two or three ultrasounds to be sure. That means most sex-selective abortions are done near the end of the second term and some later than that, according to doctors. By then many women "exhaust their money by getting scans done," said Bedi. "Then they go to the cheapest, least qualified and shadiest clinics in town."

Women who cannot afford doctors turn to village midwives for abortions. But according to Saini, midwives often use a crude method — inserting emcredil, a poisonous die, into a woman’s uterus then using another chemical, pitocen, to force labor. The results can be disastrous, including massive bleeding and death. "The midwife is only supposed to do the delivery. They are not supposed to do abortion," Saini said. "This is a criminal offense but no one does anything."

She said she sees one or two botched abortions each month.

Unsafe abortions account for one in five maternal deaths in India according to a 2005 World Health Organization report.

AMERICAN FETICIDE
Some academics and clinicians are now raising questions about how many Indian immigrants continue the practice of feticide after they come to the U.S.

"I think it’s happening with Indian immigrants here," said Barbara Miller, a professor of anthropology and international affairs at George Washington University who studies feticide in India and the U.S.

At American Fertility Services, a fertility and gender selection clinic with offices in Manhattan and Hackensack, 30 to 40 percent of the patients are Indian. The clinic uses several techniques to help parents choose the gender of their children: either isolating sperm that carry the male or female chromosomes or using a stain to identify the gender of an embryo before implanting it into a woman’s uterus. Neither technique is foolproof.

"In the Indian population, the majority, all of them want males," said Dr. Nabil Husami, a partner in the firm. "If an Indian couple has three females and they want a male, but they get another female, certainly more than half will terminate."

But Husami is quick to add most of his Indian clients come for help in having children. Choosing gender often is a second priority. And experts point out there is no statistical evidence linking Indian immigrants to feticide in the West. The authors of the Lancet study now plan to study Indian immigrants in Canada to see if their values about feticide are changing.

Meanwhile, attitudes are changing in some communities in India.

In Kajampur, a small village in Nawanshahr, girls and boys have been born in equal number for several years now.

"People here aren’t worried about carrying on the family name or paying dowries for daughters," said Mohinder Singh, the proud uncle of a new baby girl. "Due to education in the schools our thinking has changed."

Students at the College for Girls in Chandigarh, the capital of Punjab, also are rejecting old ideas. "In my personal view a female is as capable as a male. I would not make a distinction whether I had a son or a daughter," said Georgia Georg, a 19-year-old psychology major from the southern state of Kerala. "Kids are in the hands of god."

Neil Samson Katz is a freelance writer and photographer. He spent the last two months working and traveling in India. He may be reached at neil@neilkatzphoto.com