Is it true that you can do artificial insemination for preventing having a child with NF? I am female and want to have children. How can I prevent it?

Biguinigrl79

Yes, you can do IVF and screen embryo's with NF. This however works if the NF parent's mutation can be found. Some people with NF have a mutation that has not be documented yet, so the genetic testing comes up negative despite clear clinical symptoms pointing to NF.

It requires hyper-stimulating the ovaries to get lots of eggs, they than fertlize the eggs with the husband's sperm, let the zygote reach the 8-cell stage, take one cell out and do genetic mapping on it to determine weather the embryo has NF or not.

None of this is 100%, some people have gone through IVF but ended up with a child with NF.

grnmnm Can this also be done if you went serrogate?

WOW!

its been awhile since i have been able to get here, and this is a loaded question I guess.

I chose not to have children due to the fact my mom had 4 children, 3 of us have NF1, I also got the bone disease in my leg.

But my mom had scoliosis and when they operated on her to try to remove a tumor that was causing her tremendous pain and ability to even walk., She died on the operating table....leaving us 4 kids (not because she wanted to, GOD must of needed her more tham we did) try to understand why the doctors told us she'd be coming home soon. I WAS 8

I know the pain she had but cant remember her voice or any of the good times we ha with her there were no camcorders back then (1968).

I did not want to pass the disease on, I figued if I could prevent 1 more child from getting this disease or (since the tumors grow more with the estrogen as I was told)I would try to stop it.

Besides the fact that I have been treated so cruelely by people afraid they may catch what I have ....being told I am an ugly cripple, I would not want any child to be told that and have to dry their tears. There are so many innocent children out there that need good homes and if I could afford to adopt a child I would t doesnt matter if it didnt grow inside me....it would only matter if they grew in your heart
they all need love...one reason why I make afaghans , hats and go and volunteer with children I am many kids "auntie" and that is what GOD must of wanted, I may sound SELFISH in not wanting children, but I could not guaentee them I could provide a loving home wirh me.

Just remember everyone needs love; we are all in this world together and even though our opinions may differ we cant let those who dont understand win, we have to believe that love conquers all

Tears

Screening embroys means that your destroying life which is the same thing as having an abortion. I'd rather roll the dice than kill my chidren in the womb. Cause think about it your killing something thats just like you. If nature lets us survive we must have some part of it.

yo.....I'm with you there.....I like kids.....and I love all my nephews and nieces.....I would give my life for anyone of them......but I personally would never bring a child into this world if I knew he or she may have a slight chance of having NF.......I don't live in the world where "one day"...or if only people where more excepting" .I know people can be cruel and are cruel , hateful......I would never want that for a child.......living with NF isn't a blessing it hurts...it hurts my body and soul.....and its very very y painful I would never which it upon anyone ..yet alone a child....but I feel you on this one.....when I was like 16 I knew I would never want a kid....ever....due to my NF....but that is my choice....whats right for me isn't right for others.....

It is such a touchy subject. I have NF, and when my child was born 22 years ago I was not aware of the more severe complications that can be caused by NF. A friend of mine recently lost her young son to NF. She does not have NF, Chris was a mutation. His was a life in and out of hospitals. He was only 14. My daughter knows she was an unexpected surprise. My husband and I had talked seriously abut having children because of the risk. WHen I found out I was pregnant keeping the baby was my only choice. If NF was just about the cosmetic, then it wouldn't be an issue.... BUT because NF can be quite serious it's a question not to be taken lightly. BUT... if you choose to have a child, knowing the risks, then that is your right, your choice. And I wish you all the very best. :)
Jess and I have been fairly lucky. She does have a brain tumour that's stable, and she does have LDs... but is doing very well at Uni. She has, however, decided not to have children of her own...she doesn't want to risk passing NF on.

i remember that every year...up until i was about 10, my parents would drive me to a doctor 3 hours away. She would check my body and have me walk across the room, then i would get to go to the gift store.

my parents never told me why we did this and i didnt ask. i looked forward to it because it was "my day."

recently i questioned my mom on it- she said it was a genetic disorder where people get little bumps on their skin- and to tell her if i ever found anything.

now im 20 and decided to google it- thinking it was no big deal. i have never had any bumps or spinal problem or anything that i am aware of. i have to say that i am kind of ticked at my parents for brushing it off like it is no big deal. i have literally been in or close to tears for the last 2 days. i always dreamed of having kids (and am very against abortion) and i wish my parents would have prepped me with this knowledge before. all of the sudden i have this huge decision to make in life my life- one that greatly effects the life of my one-day husband and kids. other than about 10 small birthmarks, not far from the color of my skin, i have no signs of having NF. so here i am this seemingly normal young adult and ive had the greatest privilege and dream of mine forever tainted. it is really difficult for me to actually think, let alone decide, not to have my own kids because i have luckily never lived with stares and such that others with NF have had to deal with- i am afraid that my kids will have worse symptoms that i do and i will have had that child because i dont know who painful NF really is. anyway...ive gone on for awhile- if anyone has advice, etc - id love to read it. thanks!

The decision is really up to you. There are so many other things that can go wrong with a pregnancy, not related to NF. Life is so full of risks. Are you going to live your life based on what could be?

i am 43 i was diagnosed with nf in my lat 20s i show little out word evidenc of it like you i have several cafe au lait birthmarks but as im getting older i see more and mour small lumps on my skin certain ways the light hits my skin i have two children my husband and i chose to have them because babies dont come with garuantees, "normal" parents have "abnormal" children and perfect childern can suffer life catistrofic life changing events lifes too short for what ifs later

Here! Here! Maggie. So true.

By the time I found out I had NF1, I already had my two children. Both have it. One of my daughters sons has it and one doesn't. My sons daughter and granddaughter don't.What I would like to tell you is a story about my oldest grandson(who doesn't have NF) and my NF. He was born 17 years ago with meningetis.They gave him a 20% chance of living but he survived.Two years later he became very sick and the Doctors here couldn,t find out what was wrong.They sent him to a hospital 70 miles away. They were going to admit him and do some blood work on him the next day but One of the Doctors came out to talk to use and took one look at me and ask if I was the Grandmother and did I have NF ? When I told them I was and I did they immediately ordered an MRI. They found out he had fluid around his brain and made arrangements for surgery.His condition had nothing to do with NF but from the meningetis.But because I was there and they saw I did have NF they gave him the MRI which saved his life.They said another day of waiting would have made all the difference in the world.

ncbobbie- thanks so much for telling me that- its strange and often glorifying how the world works. i know that god has a plan and ill know whats right when the time comes...in the meantime this life changing decision has definately put my other worries in perspective.

I was diagnosed with NF at age ten. My case is quite severe. I have tumors growing on my brain, spine, heart, as well as several others. In addition, I have over 100 neurofibromas (in all shapes and sizes), as well as over 100 cafe au lait spots. I've had several surgeries, and have permanently lost the use of my left hand due to paralysis, and the left arm is quickly deteriorating. I've had trouble with my eyes, ears and memory, and I live in constant excruciating pain. Most days I'm lucky to make it from the bed to the couch. My children make my life worth living. My oldest daughter Victoria Anne, is ten and NF free. Olivia Grayce is two, and we knew before I had her that she had NF. We had an amnio due to a questionable ultrasound. Even knowing that she would have NF, there was never a doubt in our mind that we would continue with the pregnancy. So far she only has the cafe au lait spots. She is checked regularly, and is very happy, healthy, and quite intelligent. I never once doubted that I would have children. NF or no NF. Everything that I have endured has made me the person I am, "that which dosen't kill me only makes me stronger", maybe not physically, but mentally. I choose to have my children, and have never regretted the decision to have them. I will control my NF, I REFUSE to let it control me.

Sorry this is more of a question than reply, I am 30 and thinking about starting a family (well trying to anyway), i was diagnosed with NF when i was 19, I have a very mild case of it other than than a few cafe au lait spot and nerve tumors, I was just wondering if anybody got much worse after having a baby & also if the children who have NF got a more serve case than the parent, as i was the first in my family to have NF, I would really love to start a family I am just afraid of passing it on !