Anonymous
05/22/2019 10:44
Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
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.
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.
Anonymous
05/20/2019 16:16
Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
Your baby is going to be perfect and you will love it the moment he or she is born no matter what. I guarantee it.
Don't let this consume you, it's important to try to accept this and enjoy the rest of your pregnancy so you don't look back on this time with regrets.
Don't let this consume you, it's important to try to accept this and enjoy the rest of your pregnancy so you don't look back on this time with regrets.
Anonymous
05/20/2019 14:47
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Hi Op. i am reminded of a saying from my favorite blogger (blog? What’s what?). She says:
“Every single human being is a gamble but we love them anyway.”
Her daughter was born with significant limb differences, discovered at 20 weeks. She also does a “special needs spotlight”, and many families talk about how HARD the time from 20-40 weeks was.
It’ll be ok, OP. I don’t mean to be trite, but it really will be ok.
https://thislittlemiggy.com/
“Every single human being is a gamble but we love them anyway.”
Her daughter was born with significant limb differences, discovered at 20 weeks. She also does a “special needs spotlight”, and many families talk about how HARD the time from 20-40 weeks was.
It’ll be ok, OP. I don’t mean to be trite, but it really will be ok.
https://thislittlemiggy.com/
Anonymous
05/20/2019 14:27
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
OP, I was in your position a year ago...waiting on this test and that test (and then several more) to tell me what sort of terrible (or not) thing was happening with the baby. The waiting part was terrible, and it paralyzed me. I did what I could to get by at work and to take care of my toddler, and most days I barely made it. At one point, I called MFM and told them that I was having a really hard time dealing with the stress, and they recommended a counselor. She specialized in something a little different than what I was going through, but I went to see her and she helped tremendously. The best thing she did was offer me ideas for how I can try to rewrite the monologue that was running in my head on repeat. She gave me specific tips for what to do, and I used them. This didn't help 100% of the time, but it did help a significant amount.
Anonymous
05/20/2019 13:24
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:OP, sending you strong and positive thoughts. The waiting and the uncertainty are the worst.
You probably already know this, but you will have time once baby's born and you see what's what to figure out what, if anything, to do and when to do it. As long as baby is healthy, you will have time to find the right experts, run the right tests, do the in-depth research, and make an informed decision when you are ready to make a decision. As long as baby can pee OK, and there's nothing life-threatening, you have time.
Your baby is just going to be a baby and it won't matter what's underneath the diaper. Your baby is going to need what all babies need -- your love and attention. Please take the time you need to feel better after baby's born, get your feet under you as a new parent, and settle in to life with your wonderful baby without feeling like you have to spend those early, precious weeks and months in the throes of medical decision-making and stress.
Big hugs.
OP here, thank you for this reminder. Part of me knows this, and I think I'll feel a bit better when I have this actual little person in my arms and can get to know more about her (? sigh) as a complete person, rather than just this one issue, which is kind of all I know right now. In some ways I feel like I'm experiencing a bit of what people go through with gender disappointment before birth (though obviously a bit more complicated and worrisome), like since you haven't met the baby yet all you can do is project worries and stereotypes onto the one piece of information you have, but then once the baby is born most people grow to love their child no matter what.
Anonymous
05/20/2019 13:17
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
OP, sending you strong and positive thoughts. The waiting and the uncertainty are the worst.
You probably already know this, but you will have time once baby's born and you see what's what to figure out what, if anything, to do and when to do it. As long as baby is healthy, you will have time to find the right experts, run the right tests, do the in-depth research, and make an informed decision when you are ready to make a decision. As long as baby can pee OK, and there's nothing life-threatening, you have time.
Your baby is just going to be a baby and it won't matter what's underneath the diaper. Your baby is going to need what all babies need -- your love and attention. Please take the time you need to feel better after baby's born, get your feet under you as a new parent, and settle in to life with your wonderful baby without feeling like you have to spend those early, precious weeks and months in the throes of medical decision-making and stress.
Big hugs.
You probably already know this, but you will have time once baby's born and you see what's what to figure out what, if anything, to do and when to do it. As long as baby is healthy, you will have time to find the right experts, run the right tests, do the in-depth research, and make an informed decision when you are ready to make a decision. As long as baby can pee OK, and there's nothing life-threatening, you have time.
Your baby is just going to be a baby and it won't matter what's underneath the diaper. Your baby is going to need what all babies need -- your love and attention. Please take the time you need to feel better after baby's born, get your feet under you as a new parent, and settle in to life with your wonderful baby without feeling like you have to spend those early, precious weeks and months in the throes of medical decision-making and stress.
Big hugs.
Anonymous
05/20/2019 13:07
Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:OP checking in. Still awaiting amnio results. Had another ultrasound last week and things continue to look ambiguous and not definitively one sex or the other, but looked "more male" in this particular instance. Can't say I coped very well with hearing that in light of the XX chromosome news. I'm still pretty sad at the moment. I just wish I had more information so I even knew where to go for support or shared experiences. Hopefully the wait won't be too much longer.
I’m so sorry, OP. The waiting and uncertainty are terrible.
I will say that I had a baby with a significant physical deformity at birth and although it was terrible and scary at the time, she’s doing great and it’s totally not a big deal now. She’s just like any other kid.
Anonymous
05/20/2019 12:27
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Hugs, OP. I was thinking of you earlier today and came back to this forum just to see if there was an update. All fingers crossed for you that you get those amnio results soon and then good information and support moving forward. There are so many great docs in this area and nearby. Sending you all the best.
Anonymous
05/20/2019 12:05
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Oh, Mama! Sending you so many hugs. Just know there are people thinking of you. I wish had resources to help - geneticist have any ideas?
Anonymous
05/20/2019 11:53
Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
OP checking in. Still awaiting amnio results. Had another ultrasound last week and things continue to look ambiguous and not definitively one sex or the other, but looked "more male" in this particular instance. Can't say I coped very well with hearing that in light of the XX chromosome news. I'm still pretty sad at the moment. I just wish I had more information so I even knew where to go for support or shared experiences. Hopefully the wait won't be too much longer.
Anonymous
05/13/2019 14:33
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
For whatever it's worth, I know a boy who was born the same time as my now 15 year old who has XX male syndrome. He's doing very well.
Hugs; I'm sorry you're living with this worry and uncertainty.
Hugs; I'm sorry you're living with this worry and uncertainty.
Anonymous
05/11/2019 23:22
Subject: Re:Would you get an amnio? Ambiguous genitalia at 20 week US
Anonymous wrote:Anonymous wrote:Wishing you well, OP. What is your next step? Can you get a second opinion on ultrasound to see if a different doctor sees something else?
As it happens, it was a different doctor who did the amnio, and she did an ultrasound first to make sure of the baby's position and also take a look. She saw the same thing and explained it to us in detail, and perhaps what sucks the most, DH and I could see it pretty clearly ourselves (the usual "three lines" you get with a girl, but not as bright/distinctive as they ought to be, plus something extra up top where a girl usually doesn't have much). I sort of wish we hadn't seen it, it'd be nice to have a bit more room for denial at this point. Hoping it'll magically look different at our next ultrasound, but I don't know if that's a thing that actually happens.
This might make you feel better. We saw a MFM specialist (this was a second opinion) that did an ultrasound and told us our baby had a curved femur bone. Both my husband and I could see the curved shape she was referring to. We were counseled on all the disorders he might have. His head and abdomen were growing 2-3 weeks ahead and his arms and legs were 2 weeks behind schedule. I was so upset by the images because I couldn’t deny the curved shape. We went to Children’s Hospital three weeks later. The femur bone was not curved. They determined it was a false alarm. My baby was born healthy. They told me that ultrasounds can cause lots of false alarms because of shadows that result from the baby’s constantly changing position. Keep the faith! I wish you peace of mind. I remember how scary the uncertainty was for us.
Anonymous
05/10/2019 21:23
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
It sounds like you are having a biological girl who may or may not have ambiguous genitalia.
Ambiguous genitalia is about the same incidence as having red hair. It is far more common than we think but doesn't get a lot of airplay.
Ambiguous genitalia is about the same incidence as having red hair. It is far more common than we think but doesn't get a lot of airplay.
Anonymous
05/10/2019 21:14
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
OP, agree with PP stay off the Google. Sending prayers your way. If it is any conciliation, I know many families who were told they were having one gender and had the other. It is going to be okay.
Anonymous
05/10/2019 21:07
Subject: Would you get an amnio? Ambiguous genitalia at 20 week US
Hugs OP. Sending you love and positivity.