Great Ormond Street Hospital 'failing' intersex children

[Deleted]

http://www.bbc.co.uk/news/uk-41593914

Great Ormond Street Hospital is not meeting care standards for intersex children, a BBC investigation says.

It found that some patients who had been born with sexual development disorders, and their families, had no access to psychological care.

And not all cases were properly discussed before the patient had life changing, irreversible surgery.

Health regulator CQC is investigating. The hospital said it was committed to working with seriously ill children.

Intersex, also known as disorders of sexual development (DSD), is when sex characteristics - including genitals, reproductive organs and chromosome patterns - do not fit into the typical notions of female or male bodies.

The BBC has learned that at Great Ormond Street Hospital (GOSH):

There is currently no face-to-face psychological support for children and their families who have been referred in the last six months despite surgery continuing. The BBC understands tens of families are waiting for therapy. For several years not all children and their families have had access to face-to-face support, before having surgery

Not all cases were discussed at full the multidisciplinary team meetings at GOSH

Information about this surgery is complex but information given to parents is not in a written form that they can take away, to ensure proper comprehension prior to giving informed consent for surgery. The BBC has been told that this raises doubts as to whether parents have given truly informed consent on behalf of their child before irreversible surgery.

Over the last decade, standards and guidelines say DSD cases should be discussed by specialist teams of experts, to ensure the best possible outcome. They also say that it is crucial that families and children should be seen by a psychologist.

Prof Ieuan Hughes, emeritus professor of paediatrics at the University of Cambridge and an expert in hormone disorders told the BBC that DSD was a "very complicated area of medicine".

He said it was vital families got support from a psychologist prior to making decisions about surgery, so parents were fully aware of the life long-implications on children.

When asked by the BBC if surgery should continue in hospitals not meeting the national standards, Prof Hughes said: "It seems reasonable to me to just take a pause, get the problem sorted and get back on track as soon as possible."

When Joe Holliday was born in 1988 it was not clear if he was a boy or a girl.

During development in the womb his genitals did not fully form and he was born with a large hole in his abdomen.

The 29-year-old says specialists at Great Ormond Street Hospital told his mother he would be better being a girl, because it was easier surgically and he would not handle being a man without male genitalia.

On Joe's first birthday, his mother put him to bed and the next day brought him up as Joella. As advised by the medical team, she changed all his clothes from blue to pink overnight.

He featured in a BBC documentary in 1998, when he was 10 years old, which followed his family's legal fight to get him recognised as a girl on his birth certificate.

But from 10 years old onward, Joella suffered with depression and anxiety. He self-harmed and attempted suicide.

"I had years of feeling like I was in a black hole and not knowing why," he told the BBC.

In his 20s, by chance, he saw his medical notes and read that blood tests had shown his chromosomes to be XY - genetically male.

He also learned his testes had been removed when he was eighteen months old, despite being perfectly healthy, he said.

"I felt I feel like I lost such a large part of my life - 15 years of my life that I spent depressed and almost a recluse at one point," he said.

At the time, the decision over raising Joe as a Joella, was considered to be best practice, but now most children now born with this condition are raised as male.

He said that although the advice was different when he had his surgery 30 years ago, it was "not acceptable" that patients were not being supported now.

A shame the standards were not good enough but hopefully things will change

[Templar 331]

This kind of thing shouldn't be legal until the patient is 18.

[Deleted]

This kind of thing shouldn't be legal until the patient is 18.

It's important if they're intersex for medical reasons

[Grimbold21]

Can't parents just book a private psychologist in light of the Hospital's failure?

[Nasuuna]

This kind of thing shouldn't be legal until the patient is 18.

this is a different situation then transgenderism

“Intersex” is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn't seem to fit the typical definitions of female or male.

[Mistame]

While I sympathize with these children, it makes me wonder what drugs the parents are on.

[Deleted]

While I sympathize with these children, it makes me wonder what drugs the parents are on.

Why? [10 blah]

[Xanjori]

6 posts in, 2 of them apparently don't know what intersex is and seem to think this is Tumblr. 10/10 start.

[yetgdhfgh]

Iam intersex

... if you know what i mean

[Azadina]

This kind of thing shouldn't be legal until the patient is 18.

"male children shouldn't be legal until they are 18"

Literally how dumb the argument was.

[zlygork]

Quite a few intersex anomalities can prove dangerous to the children, not just make them a bit "weird"

[Tiravi]

Seems utterly bizarre not to check for a Y chromosome at birth.

[Moralgy]

6 posts in, 2 of them apparently don't know what intersex is and seem to think this is Tumblr. 10/10 start.

Gen-ot in a nutshell really. Gotta yell about SJWs or tumblrinas before even understanding what they are posting about.

Intersex kids are a topic that is very well, ignored in general. Parents and mostly doctors end up forcing a single direction on the kid before even knowing which way they will end up leaning. I don't just mean socially, I mean medically as well.

- - - Updated - - -

Seems utterly bizarre not to check for a Y chromosome at birth.

It is rarely that simple, the easiest thing to do is not medically alter a child until you know for sure which way they are going to go genderwise.

[Deleted]

Whats the percentage of people affected by that disorder? It can't be that high.

I don't know but does it matter? You don't provide less care to a minority just because they may be 1%

- - - Updated - - -

EDIT - Checked article and it says Worldwide, up to 1.7% of people have intersex traits, according to the Office of the United Nations High Commissioner of Human rights

[Xandrigity]

Kids born with for example ambiguous genitalia defiantly need psychological support, their parents as well. It’s not all that common so perhaps the resources weren’t warranted in that area. I used to work in a neonatal ICU and we saw this type of thing from time to time. Right off the bat social services was always working with the family to meet their psychological needs. (This was in a big city in the US)

I can’t speak to care beyond that point however. With gender issue being in the spotlight currrently I’m sure the mental health community will be, if they have not done so find ways of meeting that groups needs.

[Mistame]

Why? [10 blah]

These types of defects don't always occur "naturally".

[Cerilis]

These types of defects don't always occur "naturally".

Aha. And your source is?

[Mistame]

Aha. And your source is?

https://medlineplus.gov/ency/article/001669.htm

To be clear, by "naturally" I mean "without influence". More often than not, these cases are tied to abnormal hormones, which many drugs (including many forms of contraception) affect. It's a pretty simple deduction. My original post wasn't meant as a challenge to "recreational" drug use, but rather as a curiosity of whether or not some of the generally accepted drugs may be at fault in some cases.

[Cerilis]

https://medlineplus.gov/ency/article/001669.htm

To be clear, by "naturally" I mean "without influence". More often than not, these cases are tied to abnormal hormones, which many drugs (including many forms of contraception) affect. It's a pretty simple deduction. My original post wasn't meant as a challenge to "recreational" drug use, but rather as a curiosity of whether or not some of the generally accepted drugs may be at fault in some cases.

To be fair, it looked like you were implying a majority of cases to be intentional misuse to create said effect.

[Mistame]

To be fair, it looked like you were implying a majority of cases to be intentional misuse to create said effect.

Well that's... odd. Who in their right mind would intend such an outcome? Nonetheless, I apologize if it came off that way.