By Dr Smita Koppikar
In remote Uttar Pradesh, Uma*, a sixth-time mother, was puzzled. She had just given birth to a healthy and beautiful baby. Doctors told her she had a girl, but she could feel two bulges in the baby’s genital region that indicated testicles.
Her heart pounded with fear, given this was not in keeping with being a ‘girl’. In trying to get someone to acknowledge her deepest fears, she went from doctor to doctor, reaching Mumbai in the process.
Everywhere she looked she got the same answer: “Yes, of course, there are testes, but where is the penis? Of course, you would need to raise this child as a girl.”
Based on medical advice, she named the child ‘Rohini’ and tried to bring ‘her’ up as a girl.
As the baby grew, Uma always felt that Rohini never responded to a female name, but promptly acceded when called ‘Rohit’. “The mannerisms are always like those of a boy,” the mother said.
Eight months later, when I first met Uma, I confirmed to her that her child was born intersex. She burst into tears. She told me later that they were tears of relief that some professional was being honest with her.
I explained that an intersex condition could have several different causes due to disruption of some internal mechanism in Rohini’s body, and that we needed to conduct some tests.
In line with current patient-centered models of care, I was totally honest with her at each step. I told her we would need to readdress the gender of the child in the context of the test results, and the family’s social, cultural and financial background, explaining the long-term consequences of all of these.
It took a lot of gentle goading to get Uma and her husband to trust me, given their prior experience of the healthcare system thus far.
In light of all that I knew, I tended to favour bringing up the child as a boy already. Thankfully for everybody, the tests, and the mental health professional’s evaluation, all came back in favour of bringing up the baby as a boy, much to Uma’s relief.
Uma promptly started bringing the baby up as a boy, and Rohit himself looked much happier being Rohit rather than Rohini. Uma then was keen to normalize Rohit’s external bits. I explained that it would be best to wait until he was old enough to understand and decide on his own.
“We would do immediate surgery only to restore any functional aspect, like difficulty in passing urine. But we would not recommend operating on a child to normalize the look of the genitalia,” I said, being an advocate for the rights of a minor.
Rohit’s medical diagnosis, in fact, qualified him to receive an imported medication that caused the growth of a penis, much to the amazement of his parents.
A few months after I had first made Uma cry, I saw two big smiles and a bubbly baby enter my clinic. The couple were profoundly grateful, and Rohit was getting spunkier by the minute, a sea-change from the distress he demonstrated when being brought up as Rohini.
Rohit has what is called an ‘intersex condition’ which affects 1 in 2,000 newborns. They are identified at birth by means of any irregular looking genitalia that need to be addressed promptly by a specialist.
It is very essential that an open honest and step-wise approach be taken in line with recommended international guidelines, which, to be honest, needs more awareness even amongst healthcare professionals. Intersex conditions are also called DSD (differences in sex development), and could show up in later life with other symptoms.
Broadly speaking, symptoms of DSD might show up in later life as
(a) inability to grow into an adult of the same gender by age 13-14 years,
(b) no periods in a girl beyond the age of 16 years, or
(c) a child or adolescent showing a crossing over of gender, that is, a girl beginning to develop man-like features.
These features need to be picked up and directed to an appropriately trained and sensitive professional. This will enable an open and honest dialogue with the families, ensuring confidentiality.
The family should be offered treatments and explanation of the condition according to internationally accepted standards. Unfortunately, owing to the rarity of this condition, it foxes many healthcare professionals too.
This is why it is important to create awareness amongst the lay public as well. If you think you have a child with DSD, this article is for you.
A very common fear that parents harbour is, “Is my child going to be a kinnar (transgender)?” We assure them that we work on arriving at a gender for the child based on tests and a detailed dialogue with the family.
Bringing up the child as a kinnar is not medically accepted currently, nor is it socially feasible in the current circumstances, considering the biases and difficulties faced by the transgender community in India.
Dr. Smita Koppikar, MBBS, DNB (Paediatrics), MRCPCH (UK), CCT (UK) is a Paediatric Endocrinologist specializing in intersex disorders.
More on this topic here.