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Baby - Preemis - Ambiguous Genitalia

 
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Joined: 13 Dec 2006
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Location: Cleveland, OH

PostPosted: Dec Sat 16, 2006 10:55 pm    Post subject: Baby - Preemis - Ambiguous Genitalia Reply with quote

Baby - Preemis - Ambiguous Genitalia

I am writing on behalf of very dear friends of ours. Several weeks ago I had written to some of you asking for suggestions for placenta previa. This condition worsened and the mom in question was hospitalized last week as blood was started to pool and there were fears the placenta was going to separate. This indeed did happen and the mom was rushed into an emergency c-section on Thursday p.m.

Baby V. was born at 27 weeks weighing 1 lb. 13.5 ozs. The apgar scores were 2 and 7; the baby was placed on a ventilator and was on a 50% O2 feed. The NICU is one of the best in the country, so this little one is in good hands.

However – the doctor could not pronounce that this baby was a boy or a girl, because it had "ambiguous genitalia". I would be happy to send a photo to the group to post as a file (I do have the permission of the parents to share this) for the sake of all of us learning more. I have learned that this is as common as 1 in 2000 births!

The parents were told they would have to wait a week for genetic testing results. In the meantime, an ultrasound was performed. Before her discharge yesterday, the on-staff peds person told the parents the results of the sono – no uterus or ovaries; testicles are present but not descended. "Oh, they we can tell everyone we have a little boy, then!"

"No, it's not that simple," they were told. Even if the chromosome test comes back XY, if the baby's endocrine tests show that the baby is testosterone resistant (thus resulting in the genitalia problem), then the parents would be advised to have surgical reconstruction to raise this baby as a girl.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I cannot tell you how upset the parents are. They are clients of mine, and have really adapted a wonderful natural health lifestyle the last two years – hallelujah for that, because this little guy is going to need that help.

So – here are the questions.

Has anyone had any prior experience with this? Can hormones be accurately accessed at this age, particularly with immature testicles? Can this little boy be helped? His penis is like a little stub – his parents want to know if there is something natural that cen be done to help his male organs develop? What other info or ideas can of you share?

And lastly, I do covet your prayers for this family and little "Baby V". -Sharon Grimes
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Never have dealt with this but have seen a few programs on this and heard the stories of now adult children which were born this way...very heartbreaking because some felt trapped in the choice the doctors made for them...

I'd like to ask you out of curiosity, did the mother or father drink a lot of Soy milk and/or eat a lot of soy products?

Please see the following link and pass on to parents http://www.isna.org/index.php. -Lourdes Martinez
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Not to my knowledge - I will ask. Thanks for the other resource.

I think the bigger question at this point is --- what can be done for testosterone resistance? I will ask this in a different post. -Sharon Grimes
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Lourdes - you had asked if the mother had consumed a lot of soy products during her pregnancy, and I had said that I would ask. I have decided not to do that. This mother is already dealing with so many emotional issues about why this happened - I don't want to give her any reason to think that she is the cause of it. I am sure you understand. Maybe some day down the road that opportunity will present itself; now is not the time. It would be very interesting to find out, though. -Sharon Grimes
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Hi Sharon, I applaud your sensitivity in NOT asking the parents about their use of soy products. The "whys" of the situation really don't matter at this point, and as you said, giving them more to feel guilty about is certainly NOT necessary.

I have come across this situation a few times in a Developmental Center (state hospital) situation. Unfortunately, my experiences also encompassed severe developmental deficiencies. That is NOT the norm, though. I have also seen the documentaries & talk shows referred to earlier. There is quite a bit of trauma to the child when wrong choices are made.

Your friends sound like a pretty holistically-minded couple. IF they are open enough, perhaps they can raise their child, at least initially, without gender bias?

Giving the baby a non-gender name and a nurturing environment, manifestations towards one gender or the other will eventually begin to appear. This would most likely occur before the child reaches kindergarten age. Medically, there would be no reason to rush a decision, unless of course, there are other complications.

Including family members and close friends in their decision to wait would ease their burden of guilt, while building a strong emotional support foundation for their child and themselves, allowing the child to grow into the person they were truly meant to be, not a pre, and perhaps wrongly, -determined individual. -Elisa
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