Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Devastated by Diagnoses

13 replies

Upsetmama · 23/11/2018 14:42

I had a cvs test to rule out a gentetic condition my eldest has. Results came back as baby only being a carrier and all clear for the 3 trisomys.

We asked to find out the gender and got told The baby has 46 XXy (not kleinfelters syndrome, consultant made that clear ) baby has a genetic profile of a girl ( XX chromosomes) but because there’s a small y present - also positive for the SRY gene so baby will most likely have some sort of male genitalia or the genitalia may have ambiguities. Depending on the severity of that will also decide on whether the baby will grow up as a boy needing tostesterone or if the genitalia are barely there surgery will be required, so the baby will grow up to be a girl. Also with this condition the baby will be infertile. To say we’re devastated is an understatement. We’re confused and upset and don’t know how to deal with this. So far I have had a few scans and so far inc,using the last one at 16.2 day private one Inwas told looked like a girl as she couldn’t see anything obvious. So I’m worried about baby not developing properly. I wanted either a boy or a girl not in between. I feel horrible for being so negative. My husband made it clear from day one that if we were to have another baby it had to be healthy otherwise we would get a termination. I have two much older other children with health needs. I need to do what’s best for our family. We will be seeing the consultants at the hospital for further advice. Just want to know if anyone else been through something similar and what was your outcome, I am in my 17 week of pregnancy

OP posts:
Armygirl · 23/11/2018 18:31

That must have been a massive shock for you. I don’t have any experience of this but I didn’t want to read and run.
I hope someone else can give you some much needed support and advice. Xx

Upsetmama · 23/11/2018 21:44

Thank you for your reply. Hopefully we will get more answers at the hospital. Got an appointment at the genetics clinic next week.

OP posts:
JiltedJohnsJulie · 23/11/2018 21:54

I really feel for you OP Thanks

I’ve not had that exact situation but I’ve had two previous pg with anomalies and I don’t the think I’ve ever experienced anything more difficult.

I’m just wondering wondering if you’ve spoken to arc? They won’t tell you what to do but can be hugely helpful.

When you say your DH is really clear, how do you feel? Thanks

toastymarshmallowss · 23/11/2018 22:05

I don't have any advice OP but just wanted to say I'm so sorry Thanks sending a massive hug xxx

Helpmemyhairisterrible · 23/11/2018 22:07

Another with no experience but I hope you find a way through. Will be thinking of you tonight.

MotherOfDragonite · 23/11/2018 22:12

I just want to handhold and say I hope you're ok.

What a shock.

I also just want to remind you that the wonderful thing is that your baby is healthy. I am sure that however they develop, they will be loved and will love you.

I read an article a while ago about people with intersex characteristics and apparently it's surprisingly common -- some people don't even know they have intersex characteristics at all. The main thing that I took away from the article was how many of the people interviewed felt that early surgery had been a terrible decision for them and they wished that their parents had been told that waiting and not having surgery was also an option, perhaps even the best option.

However your baby turns out, they will be just perfect.

babysharkah · 23/11/2018 22:47

Oh my you have an incredible amount to deal with I have no advice but thinking of you.

EnglishIrishRose · 24/11/2018 09:47

If you want some advice and information take a look at the Intersex UK website. There is also a good documentary about an intersex young man on BBC iPlayer at the moment. I'd encourage you to do sone research when you have the headspace, being intersex is just a variation of normal human sex characteristics and it's important that you can love and support your child to understand their identity so that they grow up healthy and happy.

I understand it must have been a huge shock and I hope you have someone to talk to in RL about this. It's going to take time to process your feelings but don't be too disheartened - so many people are intersex and don't even know, apart from the infertility they might be perfectly healthy.

Upsetmama · 27/11/2018 10:01

Thank you for your kind words everyone, sorry I’m late in replying I’ve just been very upset and finding it hard to deal with.
Just an update I’m seeing the Professor of Clinical Genetics this Thursday. He is the best in his field, so hoping for more of an understanding of this condition. He has also dealt with our family in the past and with me a 3 years back when I initially wanted to test that pregnancy for my daughters condition . Unfortunately then I discovered during that clinic appointment when they scanned me I had a missed miscarriage. I was 10 weeks. ( baby had Down syndrome ) I’ve subsequently had 2more miscarriages since.
I’ve also requested to see the same consultant again who specialises in Fetal medicine as I want her to scan me.( she performed my CVS) Got an appointment next week. I’m soo praying and hoping this time she can see boy parts, I’ll be 18 weeks by Thursday. I do know I’ll need to see the endocrinologist soon they’ve been in touch but trying to get a suitable appointment has been difficult with clinics being in another city, husband obviously needing to be there too, but difficult for him getting time off as hes already works part time and importantly arranging suitable care for eldest who has special needs. So got a lot on in the coming weeks. I have just so many worries I can’t even write down. I have done some research and found out more info but it just makes it more scary. This website explains a bit about the condition. www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=en&Expert=393

sorry for being long winded. I’ll try and give you an update next week after Ive had my scan and meeting with the professor.

OP posts:
Lougle · 27/11/2018 10:21

It sounds like there is a huge variation on presentation at birth, upsetmama and that there may be very little difference in appearance at all in your baby. Presumably babies with 46XXy are raised as male, as they are given testosterone, despite their XX chromosomes, according to your link. I hope you get support Flowers

CrabbyPatty · 27/11/2018 10:58

Sounds tough but (as a nurse whose cared for a handful of intersex babies) once your little one is born they will just be your beautiful baby. But make the right decision for you and your family. Best wishes xxx

Spargle · 27/11/2018 15:15

It’s definitely a good idea to read about adults who are intersex, and find out about their experiences.

It sounds as though it is likely that this baby will appear to be a boy, and will be happy with this. But try to listen to it, and keep an eye on whether “boy” (or girl, if that’s how it all seems to start) keeps feeling like the correct description for your child. It could be that as your child starts to get to know themselves better, they decide that the gender assigned to them at birth doesn’t fit properly. If this is the case, they need to be listened to, and the gender they feel like needs to be respected.

It sounds like they have an equal claim to being a girl, or to being a boy - their XX chromosomes say “girl”, and the Y chromosome says “boy”, so if you don’t manage to guess correctly when they are born, you certainly don’t need to feel embarrassed, and can readily justify “changing their gender”.

The important thing is to listen to your child, and believe what they tell you about themselves (except for the times they insist that they are an elephant firefighter from Mars; that might just be fantasy!).

It is important to keep away from as many surgical interventions as possible. As long as they can urinate (the page you linked to didn’t seem to suggest this should be a problem), their genitals are good for now. Strange as it is to think about this now, you really don’t want to diminish their capacity for sexual pleasure when they are older, which surgeries can do. Also, if you agree to a gender-affirming surgery before they are old enough to confirm that they are happy with that gender, you might be taking them further away from where they need to be. They will be able to have surgery when they are older, if that is what they want.

If I were to be in this situation, I’d initially pick a gender based on what it’s genitals look like, then keep an eye on what the child thought about this. I’d call the child Robin, because that name suits girls and boys equally (I’m not suggesting you call yours Robin - it’s on my list of baby names, and would also honour an uncle).

I know it feels like a big deal, but this is just a child like any other. It just needs to be loved and accepted, like all other children. Your baby isn’t defective - just different. They will be marvellous and amazing and adorable. You will do a brilliant job raising them, I’m sure!

Let me know if you want me to try to find any specific resources about intersex issues. I found an amazing website a while ago, which I could probably find again.

Good luck! 😁

BlytheSpiritsSpirit · 27/11/2018 15:18

Op, if you are in Twitter , get in touch with @mrkh2 or something similar, she is very knowledgeable and kind. Good luck to you xx

New posts on this thread. Refresh page