June 2008 Weddings
trickeytricky
member
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Our tech team has launched updates to The Nest today. As a result of these updates, members of the Nest Community will need to change their password in order to continue participating in the community. In addition, The Nest community member's avatars will be replaced with generic default avatars. If you wish to revert to your original avatar, you will need to re-upload it via The Nest.
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Thank you.
Note: This only affects The Nest's community members and will not affect members on The Bump or The Knot.
BR POLL and T&P for a friend
A girl I was pretty close to in HS has a daughter, and just gave birth to her second kid, a son. He is 3 months old and they just found out that he has Norrie's disease, which causes blindness if not at birth, right away. As well as hearing loss in the teens/twenties and possible mental retardation.
It is genetic, the mother is a carrier, her daughters will be carriers (50%) and her sons will most likely be born with it.
She has a blind brother, but apparently he was misdiagnosed as a baby and they were told it wasn't something genetic.
Now that they know otherwise, she's been advised not to have any more children, as well as to tell (warn) her daughter down the road of the possibility of this happening to her sons.[Poll]
It is genetic, the mother is a carrier, her daughters will be carriers (50%) and her sons will most likely be born with it.
She has a blind brother, but apparently he was misdiagnosed as a baby and they were told it wasn't something genetic.
Now that they know otherwise, she's been advised not to have any more children, as well as to tell (warn) her daughter down the road of the possibility of this happening to her sons.[Poll]
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Re: BR POLL and T&P for a friend
Yes, her daughter is a carrier, she's a carrier, and her mother is a carrier. There haven't been any males in her mother's line for many many years so they had no idea that this was something that ran in the family.
I'm like you, it doesn't change anything but it is good to know. AND I look at it like it couldn't be happening in a better family, at least they all know how to "deal" with this as well as have the resources and understanding because of her brother.
It still would be so hard to learn that about your newborn.
Definite T&P for her.
My aunts/uncles/cousins are carriers of Huntington's Disease (Huntington's Chorea) so they face similar decisions. My aunt and uncle both died of the disease. One aunt did not get it and is still living. Two cousins currently have it. One has children, other does not. THey can test now to see if you will get it, but his kids have opted to not find out at this point. Usually hits between 30-50 and is completely debilitating (lose total control of nervous system, and then all physical processes, etc).
My dad watched his sister and brother die of this disease and did a lot of research on it (even wrote a few articles for magazines) but he still doesn't know what he would've done in regards to procreating. In his case, his siblings are all biologically related to each other but not to him because of adoption, so we don't face the same dilemma. But my heart breaks for anyone in this boat-what a tough choice.
How tough - T&P for your friend.
Its difficult to say how I'd react. Honestly it would depend to me on how I want to spend my life. If I were in the position I'm in now (budding career) then no, I wouldn't have children. Its going to be hard enough having children while working outside the home, that a child that needs special care like that....I just couldn't do it. Were I planning to be a SAHM I would run the risk.
How sad!
I'm in the "not sure" boat... but I can say that while it would devestate ME, what would be even worse was knowing that my daughter "shouldn't" have kids.
Our crazy, wonderful life
This was my thought too. As sad as I would be about risking a son with the disease, it would be just as hard to have a daughter who would have to deal with choosing to have kids or not as well. I think I might choose to adopt and end the disease on my side of the family.
Neena Mae. 1/7/10
"A baby nursing at a mother's breast is an undeniable affirmation of our rootedness in nature." - David Suzuki
SS- If possible, I would probably do IVF with PGD. There is actually an X-linked disease that runs in my family (juvenile retinoschisis). My uncles have it, my mom was a carrier, and my brother has it. I don't know whether or not I'm a carrier but I had hoped to have girls just to avoid possibly passing it to my sons, who will now have to get tested for it. It's not a horrible disease, but it did make my brother's life a lot more difficult than it needed to be.
T&P to them.
m/c 7/17/10
Dx: MFI- 3% morph
IUIs: Gonal-F + Ovidrel + b2b IUI= BFNs
IVF with ICSI= BFP! EDD 11/25/11
3/18- Beta #1 452! 3/20- Beta #2 1,026!! 3/27- First u/s- TWINS!
Our twin boys arrived at 36w5d due to IUGR and a growth discordance
Be kinder than necessary, for everyone you meet is fighting some kind of battle.
Honestly, I don't know what I would do. I think I would need to be in the situation to truly understand and make a decision.
My family has a genetic connective tissue disorder, all with a 50/50 chance of getting it. Medication and yearly checkups, echos, etc all help however it affects just about every system in the body, including a high chance of aortic dissection.
My dad was not aware he had this disorder until he was 30, and already had my brother and myself. My mom was pregnant with my sister at the time. I honestly believe that if my Dad had known, he probably would have chosen not to have kids.
My siblings have the disorder, and my sister is thinking about having children in a few years. She will have to have lengthy discussons and tests, be monitored very closely, most likely will be on bedrest and deliver via c-section (her skeletal system is severly affected). Looking at it this way, I wish she wouldn't have children just because I know that it could potentially put her life in danger. However, she feels differently and I respect her for that.