my baby may have a rare genetic condition... - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 14 Old 03-19-2009, 11:52 AM - Thread Starter
 
Enudely's Avatar
 
Join Date: Jul 2005
Location: Pacific Northwest
Posts: 1,732
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

mama to dd (4-15-06) and
ds (2-23-09)
Enudely is offline  
#2 of 14 Old 03-19-2009, 12:46 PM
 
monkaha's Avatar
 
Join Date: Jan 2004
Location: Readjusting to the here and now.
Posts: 2,292
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


Wish I had some sage advise or wise words.

Monica , DH :cop , DD (8) , DS1 (5) , DS2 (2/09) , and the pup
monkaha is offline  
#3 of 14 Old 03-19-2009, 03:12 PM
 
JesiLynne's Avatar
 
Join Date: Aug 2004
Posts: 12,507
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I've been reading your posts. I am so sorry.
JesiLynne is offline  
#4 of 14 Old 03-19-2009, 03:17 PM
 
Larissa's Avatar
 
Join Date: Dec 2003
Location: North Carolina
Posts: 685
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I can only imagine how difficult that is!
Larissa is offline  
#5 of 14 Old 03-19-2009, 04:51 PM
 
AKislandgirl's Avatar
 
Join Date: Jun 2008
Location: Alaska
Posts: 2,057
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
I'm so sorry!

Sue, Mama to Fiona Aileen (2/1/09) and  Maeve Penelope (10/7/11) familybed2.gif cd.gif
 

AKislandgirl is offline  
#6 of 14 Old 03-19-2009, 04:56 PM
 
tinyblackdot's Avatar
 
Join Date: Aug 2007
Location: North Texas
Posts: 2,097
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

Melanie- Mama to my super hero daughter superhero.gif bravely battling brain cancer. ribbongrey.gif ribbongold.gif  www.fightformaddie.com  and expecting 1sttri.gif 1/13!!!!

tinyblackdot is offline  
#7 of 14 Old 03-19-2009, 07:08 PM
 
Nillarilla's Avatar
 
Join Date: Nov 2007
Location: Canada
Posts: 1,033
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Proud Mama to DS 04/23/06reading.gif DD 02/18/09 modifiedartist.gif, 2 dog2.gif, and wife to wonderfuldh_malesling.GIF and adding another baby.gif. Here's my blog: http://nessabean.blogspot.ca/
Nillarilla is offline  
#8 of 14 Old 03-19-2009, 08:34 PM
 
sjbiic's Avatar
 
Join Date: Jul 2008
Posts: 41
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
sjbiic is offline  
#9 of 14 Old 03-19-2009, 10:17 PM
 
nighten's Avatar
 
Join Date: Oct 2005
Location: A mountain in TN
Posts: 5,743
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


Keep us posted.

SAHM to Guinevere (04/05/06) and Eowyn (02/13/09)
nighten is offline  
#10 of 14 Old 03-19-2009, 10:46 PM
 
Queen of my Castle's Avatar
 
Join Date: Nov 2005
Location: Muskoka, Ontario, Canada
Posts: 1,741
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Oh, mama. I'm so sorry. This must be so hard.

Amanda; mama to: Axel (Dec/04), Evangeline (Apr/07) and Ramsey, (Feb/09) born unassisted! Jethro Vader (Apr/11) and #5 due April 2014. 
Queen of my Castle is offline  
#11 of 14 Old 03-21-2009, 11:24 AM
 
LionTigerBear's Avatar
 
Join Date: Jan 2006
Location: Northern California
Posts: 6,690
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

♥ blogger astrologer mom to three cool kiddos, and trying to figure out this divorce thing-- Blossom and Glow ♥

LionTigerBear is offline  
#12 of 14 Old 03-23-2009, 02:47 PM
 
milky80's Avatar
 
Join Date: May 2007
Posts: 77
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
((())) 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.
milky80 is offline  
#13 of 14 Old 03-23-2009, 02:51 PM
 
organicpapayamama's Avatar
 
Join Date: Dec 2008
Posts: 2,523
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!!


BFPChart2.gif

organicpapayamama is offline  
#14 of 14 Old 03-23-2009, 08:19 PM - Thread Starter
 
Enudely's Avatar
 
Join Date: Jul 2005
Location: Pacific Northwest
Posts: 1,732
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

mama to dd (4-15-06) and
ds (2-23-09)
Enudely is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off