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my baby may have a rare genetic condition...

post #1 of 14
Thread Starter 
Well, he probably does. It's called Ulnar Mammory Syndrome and it effects his ability to go through puberty and have sexual function and fertility. there are a host of other things that can go wrong with it too, but we have to do the test to confirm that this is what he has and that he doesn't have any associated gene deletions....
He has a hand deformity which led us to all this
I am not having an easy time with this at all. Every time I look at my beautiful baby now all I see is... is this normal? Is that a sign of something...
This is SO hard.
post #2 of 14


Wish I had some sage advise or wise words.
post #3 of 14
I've been reading your posts. I am so sorry.
post #4 of 14
I can only imagine how difficult that is!
post #5 of 14
I'm so sorry!
post #6 of 14
s:

Our DD might have something called Neurofibromatosis. I know how it feels. It can be very consuming, and i have lived in a state of panic and chaos for the last 2 years. Its even worse when you dont have answers....its the waiting that gets you.

But no matter what, just take it all day by day, hour by hour, or even minute by minute if you have to. And dont get too concerned about what Drs say. Listen to your instincts and enjoy this time, instead of living in a limbo of waiting for Drs opinions. You will waste alot of precious time and energy dong that (which is exactly what i did).

So sorry mama.
post #7 of 14
post #8 of 14
post #9 of 14


Keep us posted.
post #10 of 14
Oh, mama. I'm so sorry. This must be so hard.
post #11 of 14
I'm so sorry. It's so normal to feel really sad about this. You wanted to give your little guy everything. I know. Please just remember that this is not your fault. You are such a good mommy.
post #12 of 14
((())) I just wanted to offer support. My son, 7 years old, has a rare, catastrophic form of epilepsy and autism. You must take time to mourn the child you were expecting and lost. That is natural. In time you will accept this new child and form new dreams for him. Don't feel bad, all moms go through this. I know I did.
post #13 of 14
I know how you feel (to a degree). I know what its like to be in the doctors office being told something is wrong. My daughter was diagnosed with anencephaly during my pregnancy a few yrs back. the difference between my situation and yours is that this was a condition that was not compatible with life. I would have taken her anyway I could have. My advice is to know that you will have a child you can love and hug and look into their eyes every day. Treasure that. Im sorry to hear about the possible diagnosis but know that at least at the end of the day you have your little one and you will get through it. some are not as fortunate. hugs!!
post #14 of 14
Thread Starter 
Quote:
Originally Posted by organicpapayamama View Post
I know how you feel (to a degree). I know what its like to be in the doctors office being told something is wrong. My daughter was diagnosed with anencephaly during my pregnancy a few yrs back. the difference between my situation and mine is that this was a condition that was not compatible with life. I would have taken her anyway I could have. My advice is to know that you will have a child you can love and hug and look into their eyes every day. Treasure that. Im sorry to hear about the possible diagnosis but know that at least at the end of the day you have your little one and you will get through it. some are not as fortunate. hugs!!
Oh! How horribly sad!! I am starting to feel a lot better about the whole thing. ds is just such a sweet little guy, his personality is really starting to shine and that helps a lot.
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