After reading Aimee's observation about # posts vs views and the resulting thread, I feel encouraged to write this, to introduce myself. Before I get too far into it, I must say that I feel completely blessed to have been reading these posts, as a lurker, I suppose, just found this site today. The support, encouragement, kindness, and compassion you all give has heart-wrenchingly overwhelmed me many times. Now some facts from the "left-brained" part of me: I'm a scientist at a biomedical company researching human genetics. I first learned of CAH in regards to a potential DNA test for newborns this morning, and I continue to find myself very interested in the intellectual offshoots of this initial inquiry. I continue to experience challenging questions to do with identity, society, and medical ethics as a result. Last weekend, I explored my own personal ethics regarding circumcision of newborn infants, and discovered that I am morally opposed to having this done on my own potential child. I tend to diverge in thought - I'll try to bring this together. I'm interested maybe in developing a test for genetic analysis of the CAH-related genes. I'm not sure what the benefit, if any, would be to providing such a test. Which genes? Who should be tested? Who else is doing this? Would testing change anything? If yes, how would it change and would this change be a good thing? For example, I'm thinking that if the carrier status of the potential parents were established, this could yield insight and a more open exchange of ideas and information to help prepare parents and doctors for the implications of raising and providing health care for the CAH+ child. What do you think? Any thoughts about other genetic characterizations, or the implications of such inquiries are also appreciated. So that's why I'm here at this site, what I'm thinking, and I'm interested also in your thoughts to this test idea, what it would mean.

So grateful to have seen these contributions and to feel like I have a bigger heart now from your big hearts. It's nice to meet you!

Amanda
pyrothiakit@yahoo.com

Amanda-
Hello. My name is Renee, and I'm 16 years old. So as you can guess, i don't know too much about what is truely wrong about me. I was diagnosed, almost exactly a month ago, with Mayer-Rokitansky-Kuster-Hauser (MRKH) syndrome. Which, if i understand correctly, is when the 46th chromosome doesn't fully develope. MRKH is when a female is born, her uterus and vagina don't fully develope. So to make a long story short, i'm unable to carry children of my own, but still am able to have a serrogate mother. Although i hear so many things about transplants of all sorts, has anyone ever tried to do a uteran transplant? If so, what went wrong? Or if not what different complications are there? I would also like to know how they go about extracting the eggs from the biological mother, to the serrogate. I know this may not be in your field, but i would really appreciate it if you could even just refer me to a book/site or anything that might let me find out how this goes on. I would love to hear back from you, but please don't feel obligated to do this! if you don't have time to dont worry about it! i was just wondering if you had any of this type of information easilly accessable to you. Thanks again, have a good day :)

__________________
- <3 always -
renee

Hi Renee,

I've read some of your posts and I think it's great how you're taking a proactive approach to learn more about MRKH. I relied heavily on google searches with keywords to learn more to try and answer your questions, here's what I've got:

"uterine transplant"
http://www.cnn.com/2002/HEALTH/pare...omb.transplant/
The first ever human uterine transplant hit the news this past March, and this is just CNN's report on it. The scientific summaries from the various news reports are pretty much the same, but I thought the different commentaries were interesting. With a uterus transplant from a donor-type approach, it seems the recipient of the uterus would be required to take immunosuppresent medication for life, but I'm not sure. That's standard procedure with most transplants anyway. On the ninth day she reported problems that seem to be like an inflammatory response to the new uterus. The doctors gave her medicine that allieviated the symptoms. Ultimately, after 99 days, the lack of good blow flow (from blood clots) to the uterus resulted in its failure and subsequent removal. Poor girl! They don’t tell us about how she's doing now, but I hope she's well.

http://www.womenshealth-elsevier.co...20articles.html
(link to the actual pdf journal article about the first human uterine transplant)

Regarding your questions about surrogacy and egg donation I googled to find these two sites:
http://www.creatingfamilies.com has some concise information
http://www.surromomsonline.com

I was thinking the links above are basic overviews and maybe you are interested in more technical information, which I wasn't able to readily find, but I checked out this book at amazon.com and after checking out the index, this seems to have the kind of technical detail that would be, to me, more interesting:

Choosing Assisted Reproduction: Social, Emotional & Ethical Considerations

I assume there's been quite a bit of research on uterine transplants using animal models, since I found several allusions to real references. It would take some digging but I bet you could find more specific information on this research, who is doing it, where are they, what have they done, most likely through reproductive medicine departments of university hospitals. With the research on growing organs, if science can grow a uterus someday to identically match your HLA type, the immunosuppresent medication wouldn't be needed. People are already working on this.

I hope this helps. It is good for me too to learn more and if you have more questions, we can try giving them a shot too. :)

My Best,
Amanda

Amanda-
Wow, that was extremely helpfull! i haven't really found time to check things out yet, but i appreciate you looking into everything sooo much. I just don't know where to start when it comes to searching on the web for things, i just feel like i keep seeing the same websites over and over. I really appreciate everything you did! my parents have really started talking about this uteran transplant thing. I mean, i know i dont' have to have children anytime soon, but still... i've got about a good ten years left before i'll prolly even start thinking about having children. And i mean.. 10 years is a lonnng time in the science world. Who knows, maybe by then they might have a uterus sitting in a test- tube just waiting for me :D anyways.. have a great day thanks for the sites again!!

- <3 always -

__________________
- <3 always -
renee

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