turner syndrome | Imamother

amother

Sun, May 02 2010, 12:01 am

my daughter was recently diagnosed with turner syndrome (which means that my daughter does not have ovaries Sad

). Before that I have never even heard of this syndrome. since our comunity is so secretive when it comes to these issues I dont have with whom to discuss it with, or to hear feedback from someone who has the same condition.
Did anyone hear about this before??
do you know if my daughter will be able to have an ivf pregnancy with an egg donor?
she will also need growth hormones did anyone give it to their kids?

Mama Bear

Sun, May 02 2010, 2:54 pm

Call up atime, they p robably can put you in touch with other women going through this.
Egg donor depends on the rav you follow. It's very rare to get a heter for it.
call up atime. 718 686 8912.

how was your child diagnosed this young? Usuauly I thought this gets diagnosed when a girl doesnt get her pd in her teens...

amother

Sun, May 02 2010, 8:57 pm

thanks everyone for answering my post! my daughter was diagnosed very early at two years old. she was very small and growing very slowly first they told me that its just ftt but after genetic testing they told me she has mosaic turner syndrome.

I know it is way to early to worry about pregnancy and puberty but I just cant help but think about it....
and I just wanted to be reassured that shell have options later on...
maybe I'm crazy for worrying about it this early but I cant help it.

amother

Mon, May 03 2010, 12:20 pm

im the amother who also has a daughter without ovaries. she is only 2 now but I also think a lot about her future. its only natural. I just hope that with Hashems help medical technology will make big gains and have options for our girls. not that I want you to be in this situation but its good support for me to know that im not the only one who is dealing with this.

amother

Mon, May 03 2010, 12:20 pm

amother

Mon, May 03 2010, 9:22 pm

hey! it is good to meet someone in the same boat as me. (not that it's actually good that we have to go through this like you said)

Rodent

Tue, May 04 2010, 5:04 am

I know someone whose unborn baby was diagnosed with Turner's Syndrome (I believe it was Turner's, genetically XO, is that right?). It was obviously a more severe case and she died inutero (23w-ish). From what I read when she was first diagnosed (out of curiosity), some women are able to have children with donor eggs, yes. (I've never been in the situation of growth hormones but I would guess (and it's only a guess) that they may be beneficial if she does want children later on, just thinking that more size will give a baby more space and less chance of complications, no idea really though, something you may want to ask).

I wish your daughter and your whole family all the best for the future.

Isramom8

Tue, May 04 2010, 7:44 am

A quick internet search shows the possibility of egg donation for women with Turner's. I hope this will work for your beloved daughter, im yirtze Hashem. The other possibility mentioned is for a woman with this condition to become a mother by adopting her children.

I don't know if you've thought about how you will raise your daughter to deal with her condition, but you might consider presenting both of these options to her in a positive light.

amother

Tue, May 04 2010, 8:45 am

[quote="Rodent"]I know someone whose unborn baby was diagnosed with Turner's Syndrome (I believe it was Turner's, genetically XO, is that right?). It was obviously a more severe case and she died inutero (23w-ish). From what I read when she was first diagnosed (out of curiosity), some women are able to have children with donor eggs, yes. (I've never been in the situation of growth hormones but I would guess (and it's only a guess) that they may be beneficial if she does want children later on, just thinking that more size will give a baby more space and less chance of complications, no idea really though, something you may want to ask).

I wish your daughter and your whole family all the best for the future.[/quote][/quote]

in most cases babies with TS are stillborn or miscarried before term.

mrsg

Thu, Oct 03 2013, 7:53 pm

I know this is coming years late, but my daughter was diagnosed with Turners syndrome at birth in 1999. There are a lot of things that I am sure that you (and I) have learned, medically, socially and emotionally...etc... We have been very open and honest with her and her 9 other siblings. She understands, at 13, most of her medical issues, and she understands that she is not the same as the other girls. Certain things are just not going to happen like they do to everybody else. Right now she would love to meet or be a pen pal with another Jewish Turners girl. If anyone would like to give a little chizuk to a girl who's feeling a little out of place it would be greatly appreciated.

---also, despite popular belief, she has not shteered any shidduchim for her older siblings.

Frum Mom

Thu, Oct 03 2013, 8:24 pm

Hi, my daughter was born in 1995 and will B'ezrat Hashem turn 18 this month. She was diagnosed with Turners Mosaic Syndrome when she was a little over a year old and is also aware of the different medical issues associated with Turners. She has not yet found a frum Turners girl close to her age and would be happy to be a pen pal with your daughter and give a little Chizuk!

mrsg

Thu, Oct 03 2013, 8:35 pm

That would be great! You can e-mail me at ssjec@jepli.org and I can give you our snail mail address and our phone number. She will be thrilled--she was beginning to think she was the only Jewish girl with Turners!

amother

Thu, Oct 17 2013, 11:10 pm

mrsg wrote:

I know someone with MRKH syndrome means no uterus at all. If you can tell me what type familly you are, chassidos/from what state then maybe I can convince her to get in touch. She is a mature teen and would really love to know someone in those situations. Thanks, if possible.

FranticFrummie

Thu, Oct 17 2013, 11:15 pm

THIS is why Imamother rocks! Very Happy

It makes me so happy to see people connect like this. May we all see nothing but nachas from our wonderful, special, unique children. Very Happy