The first kind of indication was we had an ultrasound and they said
you know you're having a little girl. So we picked out girl names and we kind of prepared for that
but one of the last ultrasounds that we had the the ob/gyn said well, you know
you might actually be having a little boy. Um and he said you know
ultrasounds aren't that accurate and so it's probably nothing, not to worry
but when she was born right away the OB said there's something that I don't,
I don't know how to explain.
Intersex means that the internal genitalia, the external genitalia,
the chromosomes, the hormones, and the person's physical appearance
don't look or correspond to classically male or classically female.
For many decades the standard of care for intersex newborns included surgical procedures
to make them look as typically female or typically male as possible.
Some doctors tell parents that these surgeries
will make their child's body look like a typical boy or a typical girl
but these surgeries can have devastating consequences for the kids that can last a lifetime.
We spoke to parents who told us they felt intense pressure from doctors
to consent to surgeries even when those operations were medically unnecessary.
We wanted to make sure she got to see you know
the best specialists and the best providers who could you know give us the answers
and it was disheartening. We left feeling like we were on an island you know
with with very little support and while we were confident enough to not proceed with the surgery
I'd be lying if I said we didn't have a lot of doubt about
oh my gosh like they've told us all these awful things. Are we doing the wrong thing by our kid?
Parents talked about feeling bombarded with scary and confusing information.
For instance doctors told parents that if they chose not to have surgery on their kid
their kid would be bullied at school, however a claim like that
has never been substantiated in medical literature.
It's common that the discussion will be about how successful those surgeries can be,
how safe those surgeries can be, and how well they can work in helping the child fit in.
What they don't include still for the most part are discussions of the potential harms.
These surgeries carry the risk of scarring and nerve damage
infertility, incontinence, loss of sexual sensation and function,
and the need to be on lifelong hormone replacement therapy.
I found out I was intersex freshman year.
I retrieved my medical records and I learned not only was I intersex,
but then I learned everything they did to me
to try to take the intersect parts of me away. It was like getting the wind knocked out of me.
When I was first born doctors found undescended testes in my abdomen
and removed them. When I was four years old,
the surgeons decided to reduce the size of my clitoris. I had no knowledge of it.
When I was 11 they said they were doing surgery on my bladder and when I found out from my medical records
is that it was actually a non-consensual vaginoplasty.
When these irreversible surgeries are conducted on children
they can have a lifelong physical impact as well as psychological trauma.
When intersex kids grow up they may want some of these operations
but that should be their decision to make.
Physicians are very powerful in this equation. The medical saying "do no harm"
plays a prominent role in care for intersex individuals.
We need to really think about the fact that there is significant risk for harm.
There are two very rare instances when surgery is required on a newborn
with a variance of sex development. One is when the internal organs are on the outside of the body
as if they were turned inside out. The other one would be
to ensure that there's a place for urine to leave the body.
Any other surgical procedure on the external genitalia of a newborn is cosmetic surgery
and is not medically necessary.
Doctors across the US continue to conduct medically unnecessary irreversible surgeries on intersex children
When the kids are far too young to consent and when the operations
could be safely deferred until the kids are old enough to decide for themselves
These surgeries need to stop.
I think our daughter is the best, the best evidence for why surgery should be deferred.
Because she's, she's awesome.
Right after she was born I um, I got to spend a little time with her before she went to the incubator.
I remember I kept saying to her like I hope you're all right,
I hope you're all right and everybody was telling us all the things
that were wrong with her, and that was so hard to hear as a parent.
But I feel like these last two and a half years she's been doing nothing but proving to us that she's all right.
I wish my parents would have known that
I would grow up and not want this to have happened to me. I wish they would have known
that when the doctors came to them saying your kids basically won't be lovable
unless we change their vagina, change this change that, take the clitoris out etcetera etcetera
that they would have let that bounce off and know, no.
Like if my daughter's not sick then you're not going to try to change her
so that she could be loved. She should be loved for who she is