Open Letter to Director of Medical Education

This afternoon I will speak to the director of medical education about her role as the head of the ethics board that controlled kidney transplants in Tamil Nadu. At the same time I will also drop by the office of Dr. Chinniyan who controls the records of the one eyed baby, and could release information on her death. This is a copy of the letter I am sending to the DCME.

Dear Director of Medical Education,

For the last six months I have been working on a story for Wired News (www.wired.com) about an illegal clinical trial that may have been going on in Chennai for more than a year. On July 29th a child diagnosed with a rare chromosomal disorder known as cyclopia was born in Kasturba Gandhi Hospital and was registered under the name "Baby of Gomathi". On hearing the reports of the child I traveled to the hospital and spoke to the Superintendent Dhanalakshmi about the child's case. Dhanalakshmi informed me that she suspected it was a random genetic defect and that the child had gone for testing at GH Hospital. However she also stated and that the mother had taken a fertility treatment from an unnamed fertility clinic somewhere in Chennai and that also could have caused the deformity.

She later showed me an internal hospital report that suggested that the mother could have been given an experimental anti-cancer drug known as "cyclopamine" during her pregnancy that is known to cause this sort of deformity. After further investigation with my sources back in the United States, I discovered that several shipments of cyclopamine have been sent to India in the last few years by LC Labs and that it was possible that doctors here in Chennai were running an illegal clinical trial to test the drug.

I believe that the fertility clinic that Gomathi went to for treatment may have dosed her with cyclopamine during illegal medical research. Several years ago Sun Pharmaceuticals covertly tested the anti-cancer drug Letrozole on 400 women telling them that it was a fertility treatment. It is not beyond the realm of reason to think that it could be happening again.

When I returned the Kasturba Gandhi Hospital and informed Dhanalakshmi of the potential ethical problem she denied any possibility of a clinical trial and refused to investigate or share information on the child's case. I urgently request that you share the child's medical records with me (which should now be available since the child died over five months ago) so that I can track down the fertility clinic and be sure that there was no foul play.

You can track down the child's record information from her birth certificate, the information is listed below:

Child's Name: No name, Mother: Gomathi, Father: Nagaraj,
Zone: 06, Division: 86A
Registration Number: 5891
Birth Date: July 29, 2006

Please do what you can to release the child's information. You can contact me via cell phone at 9380185773, or e-mail at sgcarney@gmail.com


Sincerely,




Scott Carney
Wired News

Hospital Report Says Cyclopamine Could be Culprit

An internal report from Kasturba Gandhi Medical Hospital on the birth of a one-eyed baby cited an experimental cancer drug as a possible cause for the disorder. Read the full story on the Wired News website.

The mother had gone childless for 6 years and had sought out the help of a fertility clinic to get pregnant.

In the course of my investigation I visited the hospital three times and was allowed to photograph the child as well as interview three high members of the hospital administration. The head of the pediatrics department, who attended the birth, went over the report with me, but did not allow me to retain a copy. In a section on possible causes for the child's disorder were only two references. 1) That it was a chromosomal disorder pre-existing in the parents, or, 2) that it was due to Cyclopamine--what I found out later was an experimental anti-cancer drug.

The author of the report was not present at our meeting, and the hospital staff present could not tell me how the drug came to be mentioned. Furthermore, despite my repeated requests, I was not allowed to meet with the report's author, nor would the hospital give me any information about the fertility clinic or what treatments the mother took during pregnancy. They also denied access to the mother for direct questioning.

There are many possible explanations for how the disorder could have occurred; yet the reference to the drug and fertility clinic in the hospital report needs further explanation. It is highly unusual to not collect a complete medical history from a patient--especially one who just gave birth to a child with a rare birth defect.

All drug companies I spoke with during my report said that there are currently no clinical trials being conducted on Cyclopamine in India, yet Michael Gray of Curis said that it is available through several medical distributors in the United States and Canada.

I hope to follow up on this report in the coming days.

Update on the Cyclopian Child

Earlier this week I posted a story about the one eyed child born here in Chennai. I have spent the last day meeting with government officials, doctors and hospital administrators trying to dig up more information about her. Yesterday I went to the hospital where she was born (a few kilometers from my house) and was allowed to see the child and take photos. I have a second meeting in the coming two hours and will first publish my update on Wired News, probably tomorrow.

What I can say now is that the defect probably is not a hereditary condition and other than her single eye and lack of a nose she appears healthy. She also responds to stimuli and, like any other infant, cries when disturbed. According to the research I was able to cull off Google, it seems that she has lived longer than any other child with a similar condition.

Sorry for the distant photo, I am saving my close ups for another publication.

**UPDATE: For all of you people who come in from a link and don't have time to look around for updates on the girl's status click here for a more recent post.

Cyclopian Child Born in Chennai

A one-eyed child suffering from a rare chromosomal disorder known as cyclopia was born in a hospital in Chennai earlier this week. The disorder occurs during pregnancy when the cells that constitute the forebrain fail to develop properly and fuse into a single eye. Instances of cyclopia are generally attributed to outside factors like ambient pollution, radiation, drugs and the introduction of other agents that can alter fetal development.

The pictures bare an eerie resemblance to images of Love Canal, a suburban community built on top of the most notorious toxic waste dump in New York State. While the small town was still populated, several children were born without eyes and cancer was hundreds of times the normal rate.

With waste burned openly in the streets, old MRI machines leaking radiation into local dumps, red alert toxic ratings for the city's air and water, and now one-eyed infants, Chennai is looking more like Love Canal every day.

(Photo originally from the Deccan Chronicle, sorry for the poor quality, they didin't post it online.)

8/7 UPDATE: I called Kasturba Gandhi Hospital for Women and Children to get more information about the child. Apparently it is now seven days old and the doctors believe that it may survive. They offered me a chance to see her in person, and I may follow up this post with more information later this week.

*** Several people have noted in the comments that MRI machines do not leak radiation, this is true. The people of Chennai will have to find their pollutants from other sources.