Reply to Would you get an amnio? Ambiguous genitalia at 20 week US

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[quote=Anonymous][quote=Anonymous][quote=Anonymous]Not sure if I will hear from OP, but I wrote previously about having a similar story through my pregnancy. We had our baby earlier this year, and are now going through the diagnosis process. I would love to hear back from OP with an update, and any resources you recommend? It would be so great to talk to someone who has gone through something similar.[/quote]

Hi, OP here! Congratulations on the birth of your baby. After all of the unanswered questions during pregnancy and having no name or face to attach to the little person I was so worried about, I remember feeling incredibly relieved to finally meet him - I hope you got to experience at least some of that. With all of the testing and medical stuff going on, it was incredibly grounding to realize that our baby was just . . . a baby. And that we had to do all the usual, normal baby-care stuff that we did for our oldest. There's some normalcy and peace to be found in the mundane and day to day, is what I'm saying. Hold onto that if you can, especially because the diagnosis process can indeed be challenging. I'm not sure how your experience has been, but what I remember most about it was that it dragged on much, MUCH longer than we had realized or expected it would -- we'd thought that within a few days of the baby being born we'd have some answers and could make some decisions, but it was actually close to 2.5 months before we got enough information for the doctors to recommend a sex of rearing. One thing to be prepared for though, is that the diagnosis process may not (possibly cannot) answer the question of WHY whatever is going on with your little one is happening. In our case, we found out that he is an XX male, but none of the testing pointed to any specific genetic or chromosomal or pinpointable thing that caused that to happen. Some diagnoses are straightforward, but many are not, so even after the diagnosis process is over there may still be considerable uncertainty remaining.

In terms of resources, this pamphlet is fairly comprehensive: https://www.iglyo.com/wp-content/uploads/2018/10/Supporting-Your-Intersex-Child.pdf
You can also check out the Intersex group on reddit, r/intersex - there are many intersex folks there who are open about the experiences they've had, and there are occasionally parents of intersex kids who pop in. There's a private Facebook group you can join, Intersex Support for Parents, and there you'll find an active group of parents who've been exactly where you are now. Finally, check out InterAct: Advocates for Intersex Youth (https://interactadvocates.org/) - a lot of what's on their website concerns the issue of surgeries, but there are good general resources on there as well. I wish you and your family all the best, and please reach back out with questions or just to vent if you need to! I check this thread periodically so I'll absolutely respond, even if it takes a while.

As for an update on me and my family, we're all doing as well as can be expected during these very unusual times. Adrian continues to be adorable and healthy - he's in the early stages of trying to talk, is an incredibly quick crawler, smiles and laughs all the time. Also he sleeps through the night now! He's an absolute joy. I worry about his future sometimes, but mostly I'm just glad to know him and looking forward to seeing who he grows up to be. [/quote]

Hi OP! Thank you for the resources, and being a resource :). Since I posted, we've actually finished going through the diagnostic process (which was a bit long given the delays and telehealth with the current situation). We have a similar situation as yours, while he's genetically male, based on hormonal profile they believe he has partial androgen insensitivity, but the genetic testing came back negative so there wasn't a mutation in the gene that normally causes this. It's hard knowing what, but not really why. They've offer to do a research blood test, but that still means maybe someday we might have answers. Did you do this with Adrian?

We're now in the process of figuring out what, if any, next steps for him are. I feel the same worries about the future for him and what it all means. But in the grand scheme of things, after a very premature birth, there's so much else that he has already fought through, that I know he will be a strong kid in the future, whatever that brings. You're an amazing mama! Happy to benefit from your wisdom.[/quote]

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