Thalidomide still makes victims in Brazil
Rafael, the most recent case of thalidomide’s baby registered in the country, dies before being three months old
Even though it is known, since the end of the 50’s, that pregnant women can have deformed babies when they take thalidomide, it is amazing that nowadays thalidomide babies are still being born, attesting the improper use of the drug in the country.
The drug, in the middle of the 90’s is deforming and killing babies. Rafael das Dores is the most recent case registered in Brazil, victim of thalidomide. The baby was born last year in Belo Horizonte, state of Minas Gerais, on April 16th and he would live only two and a half months. He would never be able to crawl or walk. He would not even be able to run or hug someone else. Rafael das Dores was born with no arms or legs. He was a thalidomide’s son.
With several other health problems, such as lungs and heart problems, the baby passed away on June 29th, 1994, reflecting the most cruel side of the control on the distribution of thalidomide, which is very lax in the country.
The history of Rafael das Dores could be different. It wasn’t because his mother, Luciene das Dores, a house cleaner, took 15 pills of thalidomide during the first months of pregnancy. She had the drug at home because her husband, who suffers from leprosy, takes thalidomide as a part of his treatment.
“On the last 20 years, at least 7 thousand deformed babies were born in Brazil and the victims, in the whole world, are up to 12 thousand”, says Rosângela Nascimento, 33 years old, the president of Brazilian Association of Thalidomide’s Victims (ABVT). Rosângela has been the president of the Association for seven years and she counts the victims based on the number of fertile aged women who suffer from leprosy. “This number is not quite true, since we don’t have the official numbers of the victims. We asked the Federal Government to make a research, but we never got any answer from them”, attests.
Three decades after maiming thousands of children, the drug is increasingly useful – but perilous as ever
Time, June 13, 1994
By CHRISTINE GORMAN
BUNDLED IN A STARK WHITE HOSPITAL blanket, Rafael looks like any other month?old baby. But when his mother, Luciene das Dores, unwraps the snug cover, the sight is shocking: Rafael has no arms or legs. “I got very upset and started to cry when I first saw him,” says Das Dores, 23, a part-time cleaning woman who lives in Belo Horizonte, Brazil. “When I saw him with only a head and a torso, I was devastated. I wanted to kill myself.” She could not help feeling guilty: unaware that she might hurt her baby, she had taken the powerful sedative thalidomide during her pregnancy.
Her story is a flashback to an old nightmare. Yes, Das Dores took the same medication that made headlines 33 years ago when it produced 12,000 severely deformed children around the world. But while the word thalidomide became synonymous with tragedy and its use as a sleeping pill was banned, the drug did not disappear. In fact, it has made a quiet comeback. For all its dangers, thalidomide has benefits that have made it an increasingly valuable medicine when used carefully. Misuse, however, has caused a grim side-effect: the reappearance of “thalidomide babies.”
Trouble strikes when patients don’t know about thalidomide’s dark side – and when those selling and dispensing the drug don’t give adequate warning. Although the U.S. has strict rules governing thalidomide’s use, controls are much laxer in some other parts of the world. The consequences are now apparent in Brazil, which has at least 46 new instances of birth defects caused by thalidomide. If there are cases in other countries, they haven’t received the same publicity, but given the increasing use of the drug, health officials fear that the problem will be widespread.
A few years after the initial thalidomide disaster, researchers discovered that the drug has an almost miraculous ability to treat complications of leprosy. Then they learned they could use it against some of the potentially fatal side effects of bonemarrow surgery. The past year has brought reports that the drug may help fight tuberculosis, a common cause of blindness called macular degeneration and even AIDS.
Brazil is one of the largest producers of thalidomide because it is home to perhaps 300,000 people who suffer from leprosy. About 30,000 of them take the drug to soothe the excruciating pain and eradicate the lesions that occur in severe cases of the infection. The only alternative treatment, corticosteroids, does not work as quickly or as completely. “The pain was so great that I couldn’t walk,” says Irani, 24, a former patient at the Santa Isabel leper colony. “I almost died. Thalidomide was my salvation.”
Irani was lucky to have doctors who cared enough to take precautions.They administered the drug only after putting her in a hospital, where they could make sure she did not become pregnant. But some doctors give out prescriptions without telling patients of the danger, much less keeping them under observation. In other cases, the patients, who are often poor and barely literate, ignore or misunderstand what they are being told.Greed also comes into play. Although only two companies are authorized to produce the drug in Brazil, several underground laboratories reportedly sell it to people without a prescription. Health authorities shut down one illicit operation last year, after a TV-news crew showed how easy it was to buy the pills.
The resurgence of birth defects is especially painful for members of Brazil’s first thalidomide generation, born around 1960. They believe the government has not done enough to warn women and have started their own education campaign. “People still believe this kind of thing is God’s punishment or even a side effect of leprosy,” says Rosângela Nascimento, head of the Thalidomide Victims Association.
In the meantime, U.S. scientists are trying to find out more about how thalidomide works. They have learned that the drug, besides having sedative effects, blocks two important processes in the body. The first involves the production of a substance called tumor necrosis factor, or TNF, which fights both malignant cells and infections. But if too much TNF is produced, as apparently happens in leprosy, AIDS and tuberculosis, the body makes itself sicker. The second process stymied by thalidomide is the creation of new blood vessels, which is crucial to the development of arms and legs in the fetus. The eventual goal of researchers is to alter thalidomide somehow so that it continues to inhibit TNF without harming nascent arteries and veins.
Such efforts will be of little comfort to the families of children like Rafael. Until thalidomide is made safe, governments Will have no choice but to regulate the drug tightly and publicize its perils.
Reported by Ian McCluskey/Belo Horizonte and Lawrence Mondi/New York
Brazilian Women don’t know that the drug deformes babies
The relation between deformed fetums and the effect of a medicine is not easily done. Usually, women don’t figure out that a drug can deform, like thalidomide does. Also, they usually ignore the reason whey their children were born deformed, believing that it is due to their “tired uterus” or because it was “God’s wish”.
Mrs. Nilza Maria de Andrade, who is an elementary school teacher in Belo Horizonte, Minas Gerais, is one of these cases. Before knowing that she was pregnant, she went to the doctor because she was nervous and wanted to take a tranquilizer. “I took less than 10 pills of tholidomide”, certifies. Nine months later, Daniel de Andrade dos Santos was born with his arms deformed.
Before knowing that thalidomide deformed her child and before the baby’s birth, Mrs. Nilza was worried about her pregnancy. “I felt that something was different during the pregnancy. The fetus didn’t move or kick, as usual. When he was born, the baby didn’t cry. When I asked the doctors if everything was ok with the baby, they told me that he was born with very serious problems. When I first saw my son I was shocked. I felt dizzy. But I never rejected him. I thought that he had problems because my uterus was “tired”, after being pregnant seven other times, and I also thought that he was born with problems because it was God’s wish”, tells Mrs. Nilza.
Besides having the arms deformed, Daniel was born with a problem inside his mouth (in the palate) and with lungs problems. This 12 year old boy was under surgery twice and he might need a third one. Counting the days he has spent in hospitals, we can say that he has been hospitalized for three years already.
“I work hard to help Daniel, as he needs emotional and economical support”, says his mother. She found out that Daniel was a thalidomide’s child two years ago, warned by a Social Assistant. “It is unbelievable that the doctors didn’t tell me the reason why my child was deformed.”
Mrs. Nilza has the right to be upset. According to Rosângela Nascimento, who is the president of Associação Brasileira das Vítimas de Talidomida (ABVT), the Law 8.686/93 establishes an official benefit to the victims, in values that raise from US$ 98 up to US$ 744 per month, depending on the depthness of the deformity. Besides the money, the Government provides prothesis and finances surgeries. “It’s not much. It doesn’t make my child normal, but it helps because my family and I lived, mostly, upon my salary, which is too low and not enough”, attests the mother.
Following the Association’s advice, Mrs. Nilza has been trying to get the benefit for child for over a year. Without success. “There is a lot of burocracy. We have to prove, all the time, things that are obvious. We have to show the child’s deformity by photos, medical reports and we have to have a lot of patiency”, she says, opening her heart.
Nowadays, Daniel has quite a normal life. After overcoming his own rejection towards social life, the boy is on 3rd grade and he is very fond of playing soccer. “It’s hard for him to put his pants on and to go to the restroom by himself”, tells Mrs. Nilza. In her opinion, Daniel is as happy as possible. “He is an involving person. He makes friends easily and everyone likes him.”
The poetry a of “different” ballet dancer
A professional ballet dancer. Phsychologist. Married. That’s all very normal, isn’t it? Almost. Carla Alves Barrio is “different”, as she describes herself. She is a victim of thalidomide and was born with atrophied superior members. Without the complete ten fingers, her hands grew just after her elbows.
Even though, she combs herself, puts make up on, swims, writes, skates, dances and drives not only a car but also her own life, with a lot of equilibrium and wisdom.
Carla learned how to deal well with the fact that she is handicapped since she was a little child. “My parents never treated me as if I were a victim. In the contrary, since I was handicapped, they even asked and expected more from me”, she says. She thinks everybody is a victim of something in life and the special and paternalistic treatment only spoils things.
The psychologist remebers that her mother took thalidomide to avoid seasick during her pregnancy. “Not even the doctor knew that the medicine caused bad deformity of the fetus”, she guarantees. Carla didn’t permit herself being accomodated by the fact she had a deficiency, so, she faced the struggle and was very well succeed.
Since her mother was a ballet dancer, Carla started studying ballet when she was seven. And at the age of 19 she was for the first time at Palácio dos Artes’ stage, the biggest and most famous theatre in Belo Horizonte, Minas Gerais. She made a jazz dance presentation which turned out to be a scandle and, at the same time, a delight to the public. “Dancing comes from inside”, she says, attesting that she doens’t even remeber that she has incomplete arms.
Carla represented Brazil when she was 28 years old in Taiwan, China, during the International Festival of Very Special Arts. Once again the public was delighted by her talent. “It was an unforgetable emotion and experience. At the end of the presentation the public invaded the stage. I was called for an encoure and had to repeat the presentation”, she remembers.
Nowadays, Carla belongs to the USA Association of Very Special Arts board of directors in Brazil. She works as a psychologist developing group therapies through dancing.
“I belong to the first generation of this drug’s children. New cases can and ought to be avoided. That is why people have to be informed and oriented about the correct use of the medication. They say thalidomide is very efficient for the leprosy’s treatment. But this is not scientifically proved. And we can’t keep on making guinea pig from human being.”
Valéria de Oliveira