Updated: Thoughts and Prayers Please (BR)

[prettyinpink]

Update 8/14.
I don't really know whether to call this a good update or a bad update. My heart is breaking in a million pieces for my friend and other than praying and being here for her there is nothing absolutely nothing I can do.
N and her H are scientists who work with DNA a lot, they couldn't wait for the hospital's results so they had a friend from their lab run the tests. Baby is genetically a boy. They believe that its partial androgen insensitivity. Pretty severe though because of the extent of feminization of the external genitals. The urologist at the hospital agrees. At this point they are planning on assigning the female gender to the baby, because there really is no way to "become a boy" as N said. And now there are all these really big things they are going to have to face with baby as she grows up, far bigger than what you normally have to deal with with children.
So if you could just continue to pray for this family, I would really appreciate it.


Original post :One of my friends had her baby at 35 weeks yesterday. Baby looks perfect and appears to be healthy, however they were told baby was going to be a girl and at this point all they know is that they have a healthy baby. The genitals are not fully formed so they have to do some genetic testing to determine the sex of the baby and then go from there. If you could please spare a few thoughts and prayers for N and J while they face what could be a long road ahead dealing with this for their baby I'm sure they would appreciate it and I would too.

My heart is breaking for them. As exciting as this time should be ( and is) they are having to deal with this thing they weren't expecting.

[blueshirt2003]

I'll be thinking of them. I can't imagine what they are feeling right now.

[Deleted]

Oh wow.

What a hard thing to face, especially when that done of the first questions people ask. I hope the best for them.

[prettyinpink]

Thanks ladies. They think they should have the results of the keryotyping by sometime next week. They are hoping the results say baby is a girl because her life would be a little easier then but they are just happy that baby is healthy.

[blueshirt2003]

Aug 11, 2012 13:58:30 GMT -5 prettyinpink said:

Thanks ladies. They think they should have the results of the keryotyping by sometime next week. They are hoping the results say baby is a girl because her life would be a little easier then but they are just happy that baby is healthy.

Awe, I hope the baby is a girl then.

[Deleted]

I wonder if they could do al ultrasound and see if there's a uterus. I've never heard of this happening before. I hope they have access to wonderful resources that can help them through this.

[bettydraper]

Oh my gosh. I hope everything goes well. I can't imagine what they're going through. Happy that the baby is healthy and doing well. Praying for them.

[prettyinpink]

Aug 11, 2012 14:48:40 GMT -5 @lemonlover33 said:

I wonder if they could do al ultrasound and see if there's a uterus. I've never heard of this happening before. I hope they have access to wonderful resources that can help them through this.

I thought the same thing L. The doctor feels that the genetic tests will be a better determining factor though. I will update you all if I find out more after they get test results.

[crimewatcher]

I'm sending thoughts and prayers with the family.

This sounds like perhaps there was an extra X chromosome that interfered with the full development of the testicles. (See link: en.wikipedia.org/wiki/Klinefelter%27s_syndrome ) Good news is if that is the case surgery can correct the appearance and only minor long term effects.

[JakJak]

I am so sorry for your friends what an incredibly tough thing to have to deal with. I'm sending thoughts and prayers their way!

[sookie]

That's so sad. I hope they're able to get some answers soon. Prayers being sent!

[basilosaurus]

I'll send good thoughts their way.

This actually isn't all that uncommon, and there are quite a few causes (not just XXY), although I'm imagining few talk about it. Even fewer talked about it in the past when they just defaulted to girl since surgically it's easier. Here's a ton more info on it than you probably wanted to know, but you may be able to better support your friend with some sort of background. This may not be a short road for her and her family.

www.nlm.nih.gov/medlineplus/ency/article/001669.htm

[prettyinpink]

Aug 11, 2012 19:17:56 GMT -5 basilosaurus said:

I'll send good thoughts their way.

This actually isn't all that uncommon, and there are quite a few causes (not just XXY), although I'm imagining few talk about it. Even fewer talked about it in the past when they just defaulted to girl since surgically it's easier. Here's a ton more info on it than you probably wanted to know, but you may be able to better support your friend with some sort of background. This may not be a short road for her and her family.

www.nlm.nih.gov/medlineplus/ency/article/001669.htm

No doubt that it will most likely be a long road ahead for them. Thank you for the information. She and her husband are both scientists and work with DNA on a daily basis so I'm sure that they have plenty of information. But thank you.

[softspot]

I'll be thinking of them.

[eatsrainbows]

Wow that must be really hard on of having the baby 5 weeks early. My thoughts will be with the family.

[decemberrain]

Sending my thoughts and prayers to your friends and their family. Glad to hear that overall the baby is healthy.

[iluvrice26]

I'm so sorry!!!! Sending LOTS of prayers their way!

[baconlettucetomato]

Oh wow. I can't imagine what they're going through. T&P for them for sure.

[prettyinpink]

I updated above.

[JakJak]

Thanks for the update. I'm really sorry to hear that It sounds like they are great parents already, and that is what this baby needs the most

[blueshirt2003]

((hugs))

[Deleted]

What a tough choice they had to make. I hope they are surrounded by amazing people to help them through this.

[bettydraper]

Wow. I'm sorry its more extreme than they thought. Praying for baby and parents.

[brandienee]

Thoughts and prayers indeed. What a difficult situation.

[basilosaurus]

Oh, yikes. Do they know what kind of insensitivity? There's a condition, nicknamed penis at 12, where babies are insensitive to testosterone, but in puberty they get a secondary androgen they are sensitive and start developing as males. I remember learning about it way back in high school (hence my vague description), but the name stuck with me.

Do they have any intersex resources locally? It's actually a lot more complex than just assigning girl (which is a fairly contentious decision itself with the shift toward not supporting infantile surgery), and they're going to need help. This is an org I've heard of www.accordalliance.org/ that may be able to point them in a good direction.

I've met some intersex individuals through working with PFLAG and some other GLBT orgs, so they've made me aware of some of the debate. That's the only reason I bring it up here, not to criticize your friends. I'm sure they're getting good medical advice, but sometimes the social support can be lacking in the first stages of a diagnosis.

[prettyinpink]

Thanks Sibil. A few of our other friends have pointed her in the direction of some intersex resources. I don't know for sure what they will do as far as assigning a gender yet, that's just what N had said this morning. I do know that there were a few other tests that needed to be done and they were waiting for the "real" results from the hospital before making further decisions. They don't know the type of insensitivity yet as it was just real basic tests done in the crime lab they work in since they wanted answers faster than the hospital could give them. I'll give her that link if she asks. Right now I'm just reminding her that they know what is best for this baby and to go with what their hearts ( and scientific minds) led them to.

Oh and they know its more complex than just assigning girl, as do I but am just trying to address the basics since I had asked for T&Ps for them and not get to much into it. Obviously its not anyone's decision what they do but theirs. They are both incredibly intelligent people so I know they will do what feels best and what makes the best since to them.

[honeybadger]

Many thoughts and prayers sent. What a tough (understatement, obviously) situation to be in.