Intersex story: My sister Silvana Daniela (CAH)

 Intersex story: My sister Silvana Daniela (CAH)

[EN ESPAÑOL]

Translation into English: Laura Inter

Silvana

Based on fragments from Silvana’s medical file

Note: Silvana’s medical file was published at the request of Silvana’s sister and family, who seek to make people aware of the medical abuses suffered by many intersex people.

Date of birth: 1984

Diagnosis: salt wasting Congenital Adrenal Hyperplasia (CAH)

Surgeries (according to her partial medical file, the hospital lose her complete medical file):

  1. – 1 year old: Partial clitoridectomy in the Hospital Emilio Civit Mendoza, Argentina.
  2. – 4 years of age: Clitoroplasty with poor results, Hospital Emilio Civit Mendoza, Argentina, it is suggested to perform surgery in Buenos Aires.

Clitoroplasty repair in Hospital Ricardo Gutiérrez, Buenos Aires, Argentina.

  1. – 10 years of age: Surgery for clitoral retouching, and surgery to remove intestinal tissue to build a vaginal canal, surgery failed, surgeons commit a mistake and accidentally perforated the intestines, it is suggested to wait a while for healing.

1996.- 12 years of age: Surgery to remove tissue from the large intestine that serves to lengthen the vaginal canal. Humberto Notti Children’s Hospital, Mendoza, Argentina.

2001.- 17 years old: Vaginoplasty is performed and later they suggest dilatations, Humberto Notti Children’s Hospital, Mendoza, Argentina

2001 to 2003. – from 17 to 19 years: Vaginal dilations under general anesthesia, at age 19 she refuses to continue with dilations, despite the insistence of doctors, Humberto Notti Children’s Hospital, Mendoza, Argentina

2012.- 28 years old: Due to constant urinary and vaginal infections, a surgery is again performed to see the cause of these infections. In surgery, it is discovered that there is a purulent material bag located between the vagina and the intestine tissue that was inserted to lengthen the vagina. Infection caused as a direct consequence of surgery performed in 1996. Humberto Notti Children’s Hospital, Mendoza, Argentina

They cannot remove the bag of purulent material, and simply puncture it to remove the pus. She continues with constant urinary and vaginal infections, and she must return twice more to the hospital to puncture the purulent material bag that is refilled again and again.

Physical sequelae: scars, loss of genital sensation, pain, burning, recurrent urinary and vaginal infections.

Emotional sequels: Severe depression, emotional stress, rejection to hospitals.

In 2016, she was diagnosed with liver cancer, according to the doctors, this is not related to congenital adrenal hyperplasia, nor to the “treatments” she underwent. She died at the age of 32.

Silvana’s story

Note: Her sister tells her story based on her own memories, information provided by her mother and in fragments recovered from her medical file. According to the wishes of Silvana’s family, they decided to share the full and real name of Silvana.

My sister Silvana Daniela González was born in 1984, she born with ambiguous genitalia, doctors performed a blood test called karyotype, it was determined that her chromosomes were XX, she was assigned girl and later she was diagnosed with salt wasting congenital adrenal hyperplasia (CAH). She was immediately treated with Hydrocortisone and Lonikan so she would not become dehydrated, which is what causes the salt wasting.

The doctors told my mother that her baby was born with a “malformation”, and that she should be corrected by surgery to have the appearance of a “normal” girl. The surgery was scheduled until my sister was 1 year old.

Regardless of her health situation by the salt wasting CAH, my mother says that my sister didn´t have any health problems related to her genitals, they seemed healthy, and she urinated well. She had no health problems related to her genitals, the problems began when she underwent the first surgery at the age of 1 year old.

My mother says that the doctors presented the genital surgery as the only option for my sister to be “well”, healthy and lead a “normal” life. However, these surgeries made my sister’s life a very complicated one and full of suffering, there wasn´t the life of a “normal” person, and I am sure that her life would have been much better if doctors had left their genitals intact.

My mother was never explained exactly what these surgeries were, the only explanation she received was that they were necessary for the health of her daughter and so that she could lead a “normal” life, under these lies my mother consented.

The first surgery was when she was one year old, she underwent a partial clitoridectomy, to reduce the size of her clitoris, consider larger than what the doctors arbitrarily consider “normal” for a girl. At the age of 4, she underwent another reduction of the clitoris, in the medical file only says that this surgery had “bad results”, and therefore, had to take her to a hospital in Buenos Aires to repair that “bad result”. At 10 years old, she underwent surgery to “touch up” her clitoris and make it more “aesthetic”, and the doctors had the intention, in that same surgery, to build a vaginal canal that would allow her to “have sex” in the future (obviously referring to the penetration). To build that vaginal canal they tried to remove intestinal tissue… the surgery was unsuccessful, by mistake they perforated the intestine, and the doctors decided to wait for it to heal to continue with the surgeries.

At 12 years old, once the intestine healed, doctors again perform surgery to remove tissue from the large intestine, and they built a vaginal canal.

I was too young to understand everything that was happening, but I remember that my sister was always sad, she frequently missed classes at school, and the only explanation they gave me was that she was “sick” and that she go through those surgeries to be “fine”. Due to all those surgeries, she couldn’t play with other children, she was always recovering from surgery. I also felt great sadness but I didn´t know how to help her. The only thing that doctors always said to justify their procedures was: “It is for you to be ok”.

When she was 17 years old, they again practiced a vaginoplasty, as recorded in her medical file, and began to perform dilatations in the vagina created with intestinal tissue. This dilatations according to the medical file and my mother, were every 6 months.

My sister never talked about it, everything that she went through, was not spoken in my house, and although she always had the love of my parents, my brothers and mine, she always lived all of this alone and in silence.

They had been doing vaginal dilation for 2 years, which consisted in introducing tubes of different sizes into the vagina that doctors created, to make her “fit” for penetration. Then my sister said “Enough!” She was tired of the humiliations and the doctor’s “treatments”, tired of the hospitals, so she never returned to those humiliating procedures again.

As a result of all these medically UNNECESSARY surgeries performed on her, my sister never had sexual sensation on her genitals, she never felt what an orgasm was, never experienced sexuality and this always caused her feelings of deep anger and helplessness.

In addition, at 28 years of age, she began to suffer constant urinary and vaginal infections, so he underwent surgery again to “discover” the reason for these infections. In the surgery it was discovered that she had a purulent material bag located between the vagina and the intestinal tissue inserted to lengthen the vaginal canal, a direct consequence of these terrible surgeries to which she was subjected without her full informed consent.

Doctors were unable to remove the bag of purulent material, and simply punctured it to drain the pus. The infections continued and my sister told me that she was constantly draining pus from the vagina that they created, she had to go back to the hospital twice more to puncture the purulent material bag when it filled up. For the rest of her life she continued with that problem.
With those “cosmetic” surgeries that pretended to make her “normal”, they had simply turned her into a slave of the hospitals.

At 32, my sister was diagnosed with liver cancer, and after struggling with all her strength, she died … doctors say that the cancer has no relation to the medical “treatment” she received or to the CAH, but I believe that all that pain and suffering that happened was materialized in the cancer that finally ended her life.

Her fight was tireless until the last day of her life and she always was full of optimism, even having experienced such complicated situations. I sincerely hope that my sister’s story will help to put an end to this medically unnecessary and harmful surgeries practiced on intersex children, without their consent. I hope that no other child has to go through what my sister went through.

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