Worse day imaginable

As some people on here know, I was born with Neurofibromatosis Type 1. Basically, I am prone to tumors inside and outside of my body. Everyone who has it has a 50% chance of passing it on to their children. I have a mild case of it so it wasn't likely my children would have it.
Well, as I was holding her tonight, I lifted her shirt to give her rasberries and I spotted a cafe au lait spot (coffee-colored pactches on the skin) it is one of the symptoms of NF. I lifted up her shirt more and I spotted another one on her back. If she ends up having 6 or more,then she has NF. I am constantly checking her body several times a day now looking for more. I am so petrified that she will have it. I am going to feel so guilty if I ended up passing it on to her, I'd never forgive myself. I had such a horrible childhood growing up with it,with the teasings and with looking differant. I don't want her to go through the same thing as I did.
Dale is pissed off about it, he is convinced she has it, Although he didn't say it, I know that he blames me ,
I am getting so deeply depressed right now because of it all :\\\'(

Aw, EY!  Dunno what to say!  ((((HUGS))).  Hoping that it doesn't turn out to be the case.  Can she be referred to a paed by the HV?  Are there any forums for sufferers that may be able to give information about the latest treatments?

She's a beautiful little girl and always will be!

 

Either way, you have a beautiful daughter that you will raise to be strong and understanding and self-assured. . . And hubby will be okay once the dust settles. People deal with stress in strange ways.

I hope all turns out well for your daughter.

EnglandsYank...I am so sorry that you feel guilty about it....please don't feel guilty about passing it on. I know that I don't completely understand it from a personal standpoint but I had a best friend from my high school days who had it (external, mostly stomach, back, chest) and she was absolutely gorgeous! It never stopped her in life or love.

I know its difficult but please don't blame yourself!! 

I agree with what MissyMo said, your husband will be ok in time!!  She is a beautiful baby! 

Oh Dearie don't blame yourself on things you can't control. Unfortunately it's genetics and you don't have a hand that is dealt before you were even born it's passed on through genes  so don't blame yourself. I can understand why Dale can be upset as you both want to protect your child but when something like this which is out of control you don't know how to deal with it. I don't think he blames you as you are not to blame that's just the chance of genes.

Thanks everyone.

If she does have it, I guess what I'm most afraid of is her blaming me for it and hating me for passing it on to her. I am just hoping she has birthmarks instead of cafe au lait spots. they are very similiar.

On a positive note, I guess if she does have it I could educate her on it. My mother never did that,I found out about it and learned about it when I was 18 when I decided to write a thesis paper on it for school.
Even doctors don't know much about it,every doctor I see I have to educate them on it and be subject to their guinea pig testings and I refuse to let anyone treat her like that.

Oh Carly, sending some hugs!

Were you supposed to deny yourself (and your daughter) motherhood based on a 50% chance of passing on the condition? Of course not! Those are good odds!

Once hubby gets used to the idea, he'll be fine, after all, he loves YOU right!

Also, my friend's adopted daughter has NF and although she experiences some sensory integration difficulties,  she is a bright, funny, smart and very healthy little girl and they wouldn't ever be without her.
x

Try not to let this get to you too much - there's no reason to blame yourself.  It's not your fault!  I know how easy it is to blame yourself for stuff like this - I've gone through something similar with my son.  You've got a beautiful daughter who will love you and be loved no matter what happens.

Big hugs!!!!

It is easier said then done, but try not not to worry yourself too much.

Hugs Carly! Try to take it one step at a time. You're not sure about it yet, and if it does turn out to be the case, you are well informed and strong. Hang in there! 

Carly, you are a wonderful caring mother, so don't worry.  You can't control things like that.  She will be beautiful and strong no matter what.  Feel better and PM me sometime.  **hugs**

Carly, I am so very sorry.  :\\\'(

Please, please do not blame yourself, you had no hand in this. What you do have is a beautiful little girl, who has a mother well armed to take care of and love her, no matter what the outcome may be.

:hugs:

if it is passed onto her, both you and your husband knew that there was a chance of that happening. so your other half has no real right (i'm sorry men!) to be pissed off about it. yes he is probably concerned for her, too. you cannot blame yourself at all for this. and if she does end up having it, you can just do your best to let her know she is loved and accepted, just like you would if she didn't have it..

hang in there......

:hugs:

if it is passed onto her, both you and your husband knew that there was a chance of that happening. so your other half has no real right (i'm sorry men!) to be pissed off about it. yes he is probably concerned for her, too. you cannot blame yourself at all for this. and if she does end up having it, you can just do your best to let her know she is loved and accepted, just like you would if she didn't have it..

hang in there......

Lunar is so correct in what she posted.  Wishing you all the best!

Lots of hugs! 

My BIL has NF and it's quite severe.  I know that it has impacted his life greatly. 

I hope that if she does have it that it is as mild as can be. 
I also agree with what lunar said.