Anonymous
Post 11/20/2019 19:44     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US

Much love to all of you. Wishing Adrian and his big brother good health and may they bring you lots of joy.
Anonymous
Post 11/20/2019 14:19     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US

Anonymous wrote:OP here! Test results are in, and Adrian has the hormonal profile of a boy and is expected to develop accordingly during puberty, etc. So, for sex of rearing, the doctors recommended male and that's what we're going with. All that means really is shifting to he/him pronouns and checking the "male" box on official forms now - we're still not going to pursue any kind of medically unnecessary surgery unless/until Adrian expresses a wish for that himself.

So that's that! In terms of what caused this to happen, that remains a bit of a mystery. The geneticist explained there are any number of genes that, if duplicated or if they're otherwise operating very strongly, can push sex development in the male direction in a 46XX person - scientists don't know what all of them are yet, since the field of genetics is one that's very much in progress and doctors are learning more every day. The most common one is the SRY gene, which I've mentioned before, but Adrian is SRY-negative so . . . ::shrug:: With testing we may eventually be able to pinpoint the precise gene, but it's not urgent since he's otherwise TOTALLY HEALTHY and AWESOME and BEAUTIFUL and so attentive and smiley! Essentially what this boils down to is that he's a normal, healthy kid with some genetic and anatomical quirks.

And of course, if Adrian wakes up in however many years and tells us that actually s/he is a girl after all, then that's also fine by us.

I suppose this isn't the end of the story, but I feel a bit of closure now that the gender assignment question isn't a giant question mark. Again, huge thanks to every single person in this thread who took a moment out of their day to offer me words of support and encouragement. My husband and I are in a good place with all this, and our families are all taking it in stride. I suppose all that's left to do now is to focus on the usual work of raising my adorable little baby and his hilarious, adorable big brother and hopefully ensure they're both kind, open-minded people who are comfortable with themselves. That's the easy part after all this, right?


Thanks for keeping us updated, OP! You're an amazing mom and baby Adrian will thrive in your care.
Anonymous
Post 11/20/2019 14:16     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US

OP here! Test results are in, and Adrian has the hormonal profile of a boy and is expected to develop accordingly during puberty, etc. So, for sex of rearing, the doctors recommended male and that's what we're going with. All that means really is shifting to he/him pronouns and checking the "male" box on official forms now - we're still not going to pursue any kind of medically unnecessary surgery unless/until Adrian expresses a wish for that himself.

So that's that! In terms of what caused this to happen, that remains a bit of a mystery. The geneticist explained there are any number of genes that, if duplicated or if they're otherwise operating very strongly, can push sex development in the male direction in a 46XX person - scientists don't know what all of them are yet, since the field of genetics is one that's very much in progress and doctors are learning more every day. The most common one is the SRY gene, which I've mentioned before, but Adrian is SRY-negative so . . . ::shrug:: With testing we may eventually be able to pinpoint the precise gene, but it's not urgent since he's otherwise TOTALLY HEALTHY and AWESOME and BEAUTIFUL and so attentive and smiley! Essentially what this boils down to is that he's a normal, healthy kid with some genetic and anatomical quirks.

And of course, if Adrian wakes up in however many years and tells us that actually s/he is a girl after all, then that's also fine by us.

I suppose this isn't the end of the story, but I feel a bit of closure now that the gender assignment question isn't a giant question mark. Again, huge thanks to every single person in this thread who took a moment out of their day to offer me words of support and encouragement. My husband and I are in a good place with all this, and our families are all taking it in stride. I suppose all that's left to do now is to focus on the usual work of raising my adorable little baby and his hilarious, adorable big brother and hopefully ensure they're both kind, open-minded people who are comfortable with themselves. That's the easy part after all this, right?
Anonymous
Post 11/07/2019 21:35     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US

Anonymous wrote:
Anonymous wrote:I'm so glad I stumbled upon this thread. OP, we are going through a very similar situation. Ambiguous genitalia at 18 week ultrasound and I went through with the amnio. Still waiting on results from microarray. CHOP was able to say that there is genitalia there (which our doctor at GW said wasn't developed) and it matches the chromosomes from the amnio (my husband doesn't want to know the gender).

When I found this I read through the whole thread, it was so helpful to read someone's experience going through this and read how you've dealt with your experience. I just wanted you to know how much I valued reading this and how helpful it was since I've felt completely alone in this experience. I hope you and your baby are continuing to do well and I hope you'll keep updating a bit.


Oh my goodness, hi there! OP here. I suppose it'd be a bit redundant and obvious to say I know what you must be feeling right now, but well . . . yeah. If I'm understanding, it sounds like the doctors are now saying the chromosomes and the genitalia on the ultrasound are consistent with each other, so perhaps the 18 week ultrasound was a false alarm? Which, if so, great! But if not, that's also ok! I can imagine (remember) how freaked out you must've been right now, and the loneliness that goes with that, and just want to tell you it's really, really, seriously going to be alright. Definitely once you meet your baby, but maybe even sooner than that once you've had a chance to sit with whatever information you get and mentally adjust to whatever new reality it brings.

I'm glad this thread has been of some use to at least one person out there. All the best to you and your baby! I hope the rest of your pregnancy is smooth sailing, nothing but massages and cupcakes and picking out adorably tiny outfits for your new arrival.

As for me, we're nearing the point when we'll get the final recommendation from the doctors on sex of rearing. The last round of blood testing (for now, anyway) is slated for this week, and then we're going in for the appointment to talk through the results later this month. In the meantime, Adrian gets cuter every day - in addition to big huge smiles, now we're also getting little coos and "conversation" and I'm just *in love.* Like I mentioned before, though, somewhere along the way my brain seems to have just decided that Adrian is a girl, so it takes a little more consciousness now not to refer to them that way. It doesn't help that so many people are operating on the same assumption since that's what we told them when I was pregnant (before things went left at the 20 week ultrasound) - that includes neighbors, the director and teachers at our son's day care, and other random folks here and there. We're just letting it go for now since there's no official word on whether we need to correct them or not, but hearing the teachers rave to my son about his "little sister" when I bring Adrian along to pick him up at the end of the day, or neighbors gushing "she's beautiful" . . . Yikes. (I mean, Adrian *is* beautiful, but still).

We're managing, but this is an awkward phase for sure, and one that's dragged on a good bit longer than we realized it would. I'm definitely ready for it to be over. At this point we've basically been in limbo since April, so whatever comes next will be an improvement either way. And I suppose if I end up in the unusual situation of experiencing gender disappointment 3 months after the baby has already been born, I can manage that.


Personally I think "mother's intuition" matters a lot! The doctors can say what they will say, but as your DH says, they're just making an education guess that Adrian "rounds to male." As an ethical matter, I don't think there's anything wrong with using the gender that seems correct to you at this point. You are extremely informed, so it's not like you're going to go all out and be Extreme Girl Mom and refuse to change course if Adrian identifies as a boy later on.
Anonymous
Post 11/07/2019 21:09     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US

Anonymous wrote:
Anonymous wrote:Checking in,OP. Hows it going?! How’s big sibling adjusting? Everyone adjusting well?


Big brother is doing great! Very sweet, still very excited. We're all doing ok, settling into life as a family of four. For me in particular, I'm not healing from the birth as well as I'd like (2nd degree tear), but I suppose that's a problem for another thread. The baby continues to be adorable, beautiful, SO EXPRESSIVE. I swear me and my husband aren't just a couple of besotted parents (ok maybe a little), Adrian really does smile at us!

The exact diagnosis is still undetermined, presumably we'll get it after the mini-puberty testing next month. That said, based on what we know so far the doctors' current consensus is to recommend raising the baby as male; that's what the urologist told us anyway. For some reason, hearing that things are most likely headed that direction seems to have broken my brain, even though it's what I expected, because now when I look at Adrian all I see is a little girl. Today I even slipped up and said "her" without thinking. So I guess there's still some latent denial or maybe just general processing that's happening for me. I'm trying not to dwell on it though, since where Adrian is concerned whatever gender we choose is just an educated guess anyway. I mean, if someone's gender is assigned because their parents and a team of doctors literally got together and made it up . . . that's just not a real thing, and certainly not something to get hung up on or attached to one way or the other. My husband is a math guy, and accurately described it as the doctors basically telling us Adrian probably rounds to male. :shrug: At this point, I think we're treating "sex of rearing" as nothing more than picking pronouns and deciding M or F on official forms. We didn't plan to raise our kids with strict gender norms anyway, but this really drives that home.

As all this has been going on, I've felt compelled to be more vocal about the existence of intersex people and the issues they face. I work in media, so I'm thankfully in a position where I'm well-situated to draw more attention, and I want to make use of the platform to hopefully help create a better world, but there's still the consideration of the baby's privacy. I'm not comfortable shouting from the rooftops "my baby is intersex!" because who knows if that's what they'd want - though I'm grateful for the parents who have felt comfortable being open in public, I just don't think I'll be one of them. But maybe if I can use my position as an editor to offer a space for intersex voices, that's still something. I also like to think this thread is its own little piece of advocacy, in a way, that can help the hypothetical future mom who gets a surprise at their 20 week ultrasound, goes to Google, and arrives here.

I guess I'm just musing right now, but I should actually be asleep - gotta get in a few hours before the 1am boob smorgasbord. More updates to come.


Hugs to you!

You sound amazing. Adrien is lucky to have you!
Anonymous
Post 11/06/2019 23:27     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US

Anonymous wrote:I'm so glad I stumbled upon this thread. OP, we are going through a very similar situation. Ambiguous genitalia at 18 week ultrasound and I went through with the amnio. Still waiting on results from microarray. CHOP was able to say that there is genitalia there (which our doctor at GW said wasn't developed) and it matches the chromosomes from the amnio (my husband doesn't want to know the gender).

When I found this I read through the whole thread, it was so helpful to read someone's experience going through this and read how you've dealt with your experience. I just wanted you to know how much I valued reading this and how helpful it was since I've felt completely alone in this experience. I hope you and your baby are continuing to do well and I hope you'll keep updating a bit.


Oh my goodness, hi there! OP here. I suppose it'd be a bit redundant and obvious to say I know what you must be feeling right now, but well . . . yeah. If I'm understanding, it sounds like the doctors are now saying the chromosomes and the genitalia on the ultrasound are consistent with each other, so perhaps the 18 week ultrasound was a false alarm? Which, if so, great! But if not, that's also ok! I can imagine (remember) how freaked out you must've been right now, and the loneliness that goes with that, and just want to tell you it's really, really, seriously going to be alright. Definitely once you meet your baby, but maybe even sooner than that once you've had a chance to sit with whatever information you get and mentally adjust to whatever new reality it brings.

I'm glad this thread has been of some use to at least one person out there. All the best to you and your baby! I hope the rest of your pregnancy is smooth sailing, nothing but massages and cupcakes and picking out adorably tiny outfits for your new arrival.

As for me, we're nearing the point when we'll get the final recommendation from the doctors on sex of rearing. The last round of blood testing (for now, anyway) is slated for this week, and then we're going in for the appointment to talk through the results later this month. In the meantime, Adrian gets cuter every day - in addition to big huge smiles, now we're also getting little coos and "conversation" and I'm just *in love.* Like I mentioned before, though, somewhere along the way my brain seems to have just decided that Adrian is a girl, so it takes a little more consciousness now not to refer to them that way. It doesn't help that so many people are operating on the same assumption since that's what we told them when I was pregnant (before things went left at the 20 week ultrasound) - that includes neighbors, the director and teachers at our son's day care, and other random folks here and there. We're just letting it go for now since there's no official word on whether we need to correct them or not, but hearing the teachers rave to my son about his "little sister" when I bring Adrian along to pick him up at the end of the day, or neighbors gushing "she's beautiful" . . . Yikes. (I mean, Adrian *is* beautiful, but still).

We're managing, but this is an awkward phase for sure, and one that's dragged on a good bit longer than we realized it would. I'm definitely ready for it to be over. At this point we've basically been in limbo since April, so whatever comes next will be an improvement either way. And I suppose if I end up in the unusual situation of experiencing gender disappointment 3 months after the baby has already been born, I can manage that.
Anonymous
Post 11/06/2019 19:50     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US

Anonymous wrote:
Anonymous wrote:I'm so glad I stumbled upon this thread. OP, we are going through a very similar situation. Ambiguous genitalia at 18 week ultrasound and I went through with the amnio. Still waiting on results from microarray. CHOP was able to say that there is genitalia there (which our doctor at GW said wasn't developed) and it matches the chromosomes from the amnio (my husband doesn't want to know the gender).

When I found this I read through the whole thread, it was so helpful to read someone's experience going through this and read how you've dealt with your experience. I just wanted you to know how much I valued reading this and how helpful it was since I've felt completely alone in this experience. I hope you and your baby are continuing to do well and I hope you'll keep updating a bit.


??


That was supposed to be a heart.
Anonymous
Post 11/06/2019 19:50     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US

Anonymous wrote:I'm so glad I stumbled upon this thread. OP, we are going through a very similar situation. Ambiguous genitalia at 18 week ultrasound and I went through with the amnio. Still waiting on results from microarray. CHOP was able to say that there is genitalia there (which our doctor at GW said wasn't developed) and it matches the chromosomes from the amnio (my husband doesn't want to know the gender).

When I found this I read through the whole thread, it was so helpful to read someone's experience going through this and read how you've dealt with your experience. I just wanted you to know how much I valued reading this and how helpful it was since I've felt completely alone in this experience. I hope you and your baby are continuing to do well and I hope you'll keep updating a bit.


??
Anonymous
Post 11/06/2019 15:18     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US

OP, I for one would welcome your using your platform to talk about "sex of rearing" and intersex kids to whatever extent you feel comfortable. My youngest is in PK right now and the reinforcement of gender is very intense. It seems like such a hard thing for a little person to navigate.
Anonymous
Post 11/05/2019 21:28     Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US

I'm so glad I stumbled upon this thread. OP, we are going through a very similar situation. Ambiguous genitalia at 18 week ultrasound and I went through with the amnio. Still waiting on results from microarray. CHOP was able to say that there is genitalia there (which our doctor at GW said wasn't developed) and it matches the chromosomes from the amnio (my husband doesn't want to know the gender).

When I found this I read through the whole thread, it was so helpful to read someone's experience going through this and read how you've dealt with your experience. I just wanted you to know how much I valued reading this and how helpful it was since I've felt completely alone in this experience. I hope you and your baby are continuing to do well and I hope you'll keep updating a bit.
Anonymous
Post 10/24/2019 20:44     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US

OP I'm so happy for you and sweet baby A. Congratulations!

I want to echo what a pp said that you don't have to feel strong all the time to be strong. You're doing great. There will be a million hard moments but you will handle them with Grace and fortitude and kick ass for your family.

Also, I think part of the reason you felt like your brain broke lol when the doctors were directing towards male might be because you already have a son, and I think when we're anticipating a new baby we kind of think about what it would be like to raise the other gender. So the default kind of went there a little bit, maybe? But either way, it's okay. We have all kinds of reactions to things like this and it doesn't mean that there's anything wrong with feeling what you're feeling in the moment. Sorry for babbling. I just want you to know that I, and so many of us on this thread, support you so much and you're doing great.
Anonymous
Post 10/23/2019 09:18     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US

Hugs, OP. I'm glad Adrian is continuing to do so well and hope that you heal soon, too. This experience sounds like such a process, and it makes complete sense that new information hits you in a certain or new way. It takes time. I agree with others that Adrian is lucky to have you and your family!
Anonymous
Post 10/22/2019 18:30     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US

Anonymous wrote:
Anonymous wrote:Out of curiosity (and I’m sure this has been covered so apologies!), but is there a way to test the baby’s chromosomes to determine their sex?


Read the thread.


Please read the thread. You will then understand that biological sex of male vs female can be more complicated than XX vs XY.
Anonymous
Post 10/22/2019 10:44     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US

Anonymous wrote:Out of curiosity (and I’m sure this has been covered so apologies!), but is there a way to test the baby’s chromosomes to determine their sex?


Read the thread.
Anonymous
Post 10/22/2019 10:41     Subject: Would you get an amnio? Ambiguous genitalia at 20 week US

OP, every time I see this thread pop to the top of Recent Topics, I get excited. You sound like a really wonderful, thoughtful person. I hope your downstairs heals up well in the near future and that you continue to get as much delight from baby Adrian as you have thus far!