Anonymous
Post 05/23/2019 23:24     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:OP again, got some results back. It's not XX male syndrome, and the overall microarray looked normal. The only test result we're still waiting on is the one for congenital adrenal hyperplasia, and with the other things ruled out that seems to be the most likely cause here. Either that or I've got a surprise ovarian or adrenal tumor that's secreting hormones and this is the particularly crappy way I'll find out about it. And so the waiting continues.

As always, thank you all for the support and good wishes. It really does help some to know there are folks out there hoping for the best along with me.


I became a special needs parent last year to a child with a highly unstable and dangerous disease...it developed 8 years after giving birth. Parenthood is a literal crapshoot. You can't always predict or get healthy children. However they are a joy.
Anonymous
Post 05/23/2019 23:15     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:This is OP. There were never any concerns about a heart defect, the concern is about a serious condition - congenital adrenal hyperplasia - that affects the adrenal glands and requires lifelong treatment with medication and hormones, and which can lead to life-threatening adrenal crises. That concern *hasn't* been alleviated - that's the one test result we don't have back yet, and based on what we've been told it's likely the baby will test positive for it. So I'm worried about that, and yes, I am worried about the baby's genitalia as well - I don't consider that merely a matter of appearance, since growing up "different" can be an ordeal unto itself, to say nothing of the functional issues that can be associated with virilized genitalia. That said, I'm not terribly interested in having this thread turn into a debate about the ethics of surgical correction or whatever else people are fighting about - I'm feeling sh*tty enough as it is, and I've already read plenty on both sides of the debate elsewhere on the internet.

I'm grateful to those of you who've responded kindly and empathetically, or have shared resources or your own experiences with learning that your child might face additional challenges in life, even if they aren't exactly the same as this.


Op I hope you will get the results back soon. And I hope the results will help you enjoy the rest of pregnancy.
Anonymous
Post 05/23/2019 21:44     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
It doesn’t sound like it’s necessarily that bad a thing to manage.
Also - to have an actual CAH child both parents have to have a recessive gene for it. Get yourself tested?


This is very rare - not sure you’ll find someone with experience with it.
https://en.m.wikipedia.org/wiki/Congenital_adrenal_hyperplasia

https://www.mayoclinic.org/diseases-conditions/congenital-adrenal-hyperplasia/symptoms-causes/syc-20355205
Anonymous
Post 05/23/2019 21:35     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
My heart really goes out to you. This is not easy. Sending good thoughts your way and praying that you get good news
Anonymous
Post 05/23/2019 21:01     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
This is OP. There were never any concerns about a heart defect, the concern is about a serious condition - congenital adrenal hyperplasia - that affects the adrenal glands and requires lifelong treatment with medication and hormones, and which can lead to life-threatening adrenal crises. That concern *hasn't* been alleviated - that's the one test result we don't have back yet, and based on what we've been told it's likely the baby will test positive for it. So I'm worried about that, and yes, I am worried about the baby's genitalia as well - I don't consider that merely a matter of appearance, since growing up "different" can be an ordeal unto itself, to say nothing of the functional issues that can be associated with virilized genitalia. That said, I'm not terribly interested in having this thread turn into a debate about the ethics of surgical correction or whatever else people are fighting about - I'm feeling sh*tty enough as it is, and I've already read plenty on both sides of the debate elsewhere on the internet.

I'm grateful to those of you who've responded kindly and empathetically, or have shared resources or your own experiences with learning that your child might face additional challenges in life, even if they aren't exactly the same as this.
Anonymous
Post 05/23/2019 20:22     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
It seemed to me that OP’s major concerns about a heart defect were alleviated and she was discussing her child’s physical appearance. If I misread the last few posts by OP, I apologize.
Anonymous
Post 05/23/2019 20:16     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
To the previous posters, I beg of you to consider the OP and stop posting your opinions on what she should and shouldn’t do. All the OP needs right now is empathy and kindness, she is clearly considering all the different implications of this and unless you have truly had to make the same type of decision (which I do not think any of these posters have based on their posts) you should absolutely refrain from commenting out of human decency. Let’s try to be kind. The Op is considering all the factors you mention.

OP please ignore the others and know that the majority of this thread is thinking of you. I can’t imagine having to make these types of decisions and it sounds like you are doing so with thoughtfulness, love, and a very level head given everything. Please take care of yourself and I do agree with others that this will feel a little bit easier when you have your sweet baby in your arms. It’s not an easy path but one you all will navigate together as a family.
Anonymous
Post 05/23/2019 20:05     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
I feel like we’ve lost track of the fact that OP is less considered about gender and more concerned that this could indicate a sections or even fatal health condition.
Anonymous
Post 05/23/2019 19:54     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:Could you guys stop name calling? The OP doesn’t need that on her thread.


right... OP won't mind being bullied on her own thread but omg don't call bully a moron, oh no, that would be mean
Anonymous
Post 05/23/2019 14:48     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Could you guys stop name calling? The OP doesn’t need that on her thread.
Anonymous
Post 05/23/2019 13:58     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:
Anonymous wrote:For me, what-ifs are far more stressful than concrete information. I wouldn’t want to go through the rest of my pregnancy a basket case (and I would be). Only you know yourself.


This. I'd get the amnio.


I’d get the amino. The stress would be too much for another 20 weeks.

I’m so sorry you are going through this.
Anonymous
Post 05/23/2019 13:53     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:
Anonymous wrote:OP don't let the crazies here rattle you. when the dust settles, you will do what is best for your child as you see it. that's all you and all of us can do.


Actually, parenting a child with medical issues requires doing a lot of research and due diligence before taking major steps (like genital surgery that could have major psychological impacts).


actually, that's a part of what i had in mind, you moron. OP already read a bunch of stuff without knowing what's in store. but she should absolutely ignore YOU and people like you who are here to pursue their agenda de jour and have no stake whatsoever in the future of OP's child.
Anonymous
Post 05/23/2019 13:15     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:OP don't let the crazies here rattle you. when the dust settles, you will do what is best for your child as you see it. that's all you and all of us can do.


Actually, parenting a child with medical issues requires doing a lot of research and due diligence before taking major steps (like genital surgery that could have major psychological impacts).
Anonymous
Post 05/23/2019 13:09     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
OP don't let the crazies here rattle you. when the dust settles, you will do what is best for your child as you see it. that's all you and all of us can do.
Anonymous
Post 05/23/2019 12:46     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:
Anonymous wrote:OP I know this is all very new (and that CHA has health issues apart from the gender issues) but I wonder if you'd be helped by reading about intersex and gender issues in general. The fact is, gender in the animal kingdom (including humans) has never really been wholly binary! In many ways your child (if they are CAH) is extremely lucky to be born today, when we know so much more about gender differences and are more accepting. I can understand it's a shock, but it's going to be OK and will open your mind to a whole new world of information and ways of seeing categories that you formerly thought were entirely fixed.


I've been doing a good bit of this, and it's been helpful and enlightening to some extent - I've certainly learned a lot about all the different ways people's development can and does diverge from what we consider the binary "norm." Even as a pretty progressive and well-educated person, I've had my eyes opened to a lot. On the other hand though, I've also encountered a lot of very fraught debate about the right way to raise a child who has a condition like this, arguments about whether corrective surgery is reasonable or beneficial or selfish or barbaric, and wading into those issues knowing I'll have decisions to make about those things in the future is what's contributing to a lot of my stress. It'd be helpful for me to hear from other parents on DCUM who've confronted those kinds of questions, or similar ones, but I know there may not be any folks like that since these conditions are somewhat rare.


Just relax and enjoy your child. Unless there are immediate necessities - such as a problem with a urethra- you probably won’t need to decide much for quite some time.