RattieLady: You have NF II correct? Do/did you have/had spinal tumor/s as well....have you discussed how the added weight of being pregnant will be for you? Will you have to be on Bedrest in the latter stages? Have you had a consultation with a genetic's doctor before making this decision to have a child....not that having NF II is the worst thing in the world but what are the odd's a child you have will inherit this? I went to see a genetic's guy before having my son to find out if I had NF II (that is to get his best guess if I did or not) because I couldn't imagine trying to raise a child/ learn sign language myself and teach the child that as well in the event I became deaf one day in effort to stay alive.(mind you with gamma knife isn't the hearing preserved?, so with having that one wouldn't become totally deaf.)
Kathleen
Hi Kathleen,
Yep i do have NF2. I've had one lot of spinal tumors removed but i still have more on it. No added weight hasn't been discussed with me. We did discuss with the genetics doctor about the chances of my child having NF2. They said it would be a 50/50 chance because my fiance hasn't got NF2, also they said that they can do a test on the baby early in the pregnancy to find out if the baby has NF2, we will be given a choice to continue with the pregnancy or not. I'm now 100% deaf but i don't do sign language because i have what called an ABI [Audiotory brainstem implant] This gives me 70 hearing. I works by sending the sound straight to the brain. It's not the same as normal hearing, it's like beeps andtone tones at different pitches and volumes. If someone talks to me while i'm not looking at them i can't understand a single word, but lipreading and the ABI together help my understand whats been said. The hospital i had it fitted at fit people who have NF2. There's only 2 of us from that hospital that have the ABI. If our child ends up with NF2 they will fit our child with one. If our child has NF2 i could not,not give that child a chance.
I'm seeing my NF2 consultant next month and i will discuss everything with him. All i want to do is be a mum, and i'm not letting NF2 stop that. One lady i know who has NF2 knowS a woman who's had 4 children and none of them have NF2. It started and ended with her.
