Swyer syndrome is a condition that causes a genetically male fetus to develop in almost every way as female.
I had a comment on the blog that describes it like this:
'The fetus tries to create ovaries, but lacks the right ingredients, and so the organs become 'streak gonads' - neither testes nor ovaries, just flesh'.
Genetically, these babies are unable to make testosterone or other male hormones. So they develop as female, but their testes, known as 'streak gonads', develop in the same place as ovaries.
Most girls don't get diagnosed with Swyer syndrome until they're teenagers, the flag being the fact they don't go through puberty. They require hormone therapy, and as their streak gonads are also a risk of cancer so they will often choose to have them removed.
Androgen Insensitivity Syndrome or 'AIS':
Androgen Insensitivity Syndrome is a condition that causes cells not to be able to process certain male hormones.
It's similar to Swyer Syndrome as genetically male babies develop female.
However, women with AIS are highly unlikely to have a uterus, fallopian tubes or a cervix. There's a stereotype in society at the moment that they're tall and pretty (remember this episode of House with the beautiful supermodel with AIS?). But just like everyone else, they differ widely.
What does this mean for Midwifery Practice? - FAQs
I'm really excited about today's topic as I've had the privilege of interviewing someone with an intersex condition about care.
She's consented to let me quote her in this post.
1. Can women with Swyer syndrome/AIS get pregnant?
Broadly speaking, both conditions mean donor eggs are needed if pregnancy is possible at all.
Women with Swyer syndrome usually have a uterus. Their uterus might be hypoplastic (underdeveloped), so there is more chance of preterm labour or other problems.
They'll often need hormone replacement therapy, and ultrasounds will usually be frequent.
Obstetric led care is the normal course of action, but midwives are really important!
Women with AIS are far less likely to be able to have a pregnancy, as most do not have a uterus - but it's not unheard of.
2. Can women with Swyer syndrome/AIS breastfeed?
There's no reason why not! Though sometimes they'll need to help their lactation along with expressing, and occasionally the drug domperidone. Obviously if they are adopting a baby, they will need to see a lactation consultant for the right support pumping and using this drug. But it is possible, and some women are very successful in their ability to breastfeed (not to mention vocal on breastfeeding forums!).
3. Is there anything I should bear in mind looking after these women, either in pregnancy or as part of an adoption process?
Having surgery as a young teenager, hormone replacement therapy and not knowing what to tell your friends is hard!
Along with this, the lady I talked to has had relationships end based on her condition and the fact she can't have children naturally.
They will likely have struggled with society's perceptions.
The lady I interviewed is pretty, in her mid-twenties, and describes a supportive group of friends as she has got older. She is confident and happy. But to quote:
'When I was in college just after I found out, I told some close friends and they decided to tell most other people in college. A friend came up to me one day and said 'this person said you had a penis and balls, is it true?'
These are not easy conditions to cope with. Be sensitive, and make sure if they have a support person with them you have their express permission to discuss their condition.
Try to be supportive without being over worried - for instance, don't bring lots of students to see them as an 'interesting case'. Luckily our society is developing and starting to accept intersex conditions - but we have a heck of a long way to go.
If you take one thing away from this post, let it be: despite genetic differences, these are women and should be treated as such.
4. Do your research
Try to make sure you and the rest of their team know about their condition well enough not to ask them questions that are self-evident. Depending on the conditions, these might include like 'when was your last period?' or 'have you been pregnant before?'.
5. Know that they may not ask for help, even if it's needed
My own experience looking after women having children with intersex conditions is that they don't ask for help much. Supposedly this is because they have been used to not talking about their condition and just 'getting on with it'. Make sure they know your support will always be given. Ask how things are at home. See if they want to talk about how they feel about their pregnancy.
Observe breastfeeding (as long as they consent) as they might just wave you away because they don't want to be seen as incapable.
Obviously, this won't be true of all women, so don't assume or force your support on them either.
These women can be vulnerable without us noticing - so spend time with them, get to know them, and offer them the best of your support if you can.
Thanks go to the lady who was kind enough to let me interview her, and the excellent support group she runs on facebook (post edit: this now appears to be gone, does anyone know of any others?)
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