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My Husband and i are talking about having a child down the road but we are scared that the child will get nf 1 in a more severe way then what i have. i have a mild to moderate form it. does anyone feel guilty Knowing that there is a 50 50 chance the you child will get nf 1?
thanks alicia
Autism Neurofibromatosis Vasectomy Neurofibroma Adoption Epilepsy Pregnancy
I also have a mild case of NF1. Even though my husband knew what could happen, we went to a genetic counselor before we got pregnant. We discussed what could happen. Happily my son does not have NF. We got more scared by a difficult pregnancy and there for only have one child. It takes a leap of faith. Anything can happen with any pregnancy.
Yes it's scary. My son does have NF1 but my pregnacy wasn't planned. I was married at the time, but now am divorced. My son also has autism which is not related to NF. As far as NF he has it, but other than one large neurofibroma on the inside of his leg...nothing. Yes it's scary and it takes a lot of faith. And on the note of faith I have a book of Christian Poetry out. My icon is the cover. It's called F.R.O.G.I.E. (Fully Rely On Gon In Everything). If anyone is interested. It is avalible on Amazon and directly from me as well at aboisot@mcpsweb.org . I don't really make more than a few cents per book through Amazon, I make a little more if I sell them myself. I didn't really do it to make money though, although that would be nice. It was a healing process. I went through a difficult time with my son and his behavior and school and such....but that is a different story.
I have to kids (who are all grown up now) but one has NF and the other one doesn't.
Yes I feel guiltly, but he seems ok with it...although he has other issues. Anyway, I would have had more kids if there wasn't a chance that they would be born with NF.
But, we never know, so I had my tubes tied after my second child was born...that was almost 20 years ago.
Good luck in whatever you decide. :o)
Frog, Why do you think your son's autism is unrelated to NF?
http://cat.inist.fr/?aModele=afficheN&cpsidt=16259217
http://www3.interscience.wiley.com/journal/71008623/abstract?CRETRY=1&SRETR Y=0
http://www.exploringautism.org/autism/evaluation.htm
Cindy
My oldest turned 19 Sunday and when I started having kids my NF was mild i had no trouble with it and I didn't know the hystory on NF in the family.My youngest is only 1 of my kids with NF shes 16 and 1/2.I would have any more kids now but I can't anyhow.Now it would probably kill me if I could carry kids,mine has gone from mild to extreamely bad.
what did the genetic counselor say? i would love to have a baby. im just really scared that it will come out with nf.
She went over the statistics, how genetics work and what kind of chance we have. She told us that my mild case would not be predictive of what my child would have. But if it helps, my mother has a fairly mild case and so so my brothers and I. She did say that only we could make that decision. It gave my husband more information about NF than he had. Like I said, I really did not fear having children because of the NF. I feared it so much more after a difficult pregnancy (unrelated to NF).
I have met people who have been put off having children thanks to peoples ignorance's. Someone I know kept having people comment on how horrible they are for making the decision to have children and how its wrong to continue the disease...
These things upset me, so I love it when people take everything into consideration and ignore ignorant and wicked people.
There are chances you child could have nf and it is a difficult decision to make but people with a lot of love in their hearts will make wonderful parents as I am sure you both will
i also have a mild to moderate case of nf 1 me and my wife found out she was pregnant a few weeks ago they offered a genetic counselor but i figured there is nothing they could tell me that i didn't already know. the pregnancy is earlier then planned. and of course ill feel bad if the child has nf. you would need to be carfull because nf in pregnancy can really set it off but am sure you know that i would say from my experience of talking to experts at fourms and talking with people who have nf on sites like this and at nf camp, is if you realy want kids of your own go for it
because who know what can happen i was a gene mutation so for any one can do is hope and pry there kidds come out healthy theres a millon disease that kids can be born with even with two "healthy/normal" parents
why not the adoption option. many kids are out there who need loving parents.
dont risk it. i did and both my girls have it. plus you could get way worse while with child. look into adopting.
my daughter is a spontaious mutation. she is now 20 and has a mild case of nf. she has always said she will adopt because she doesnt want to have a child with nf. now that she has a boyfriend she says, if they get married she will have children. i hope she isnt blinded by love and realizes all of the problems that go with nf. she is most definitly not mature enough to have kids right now, but i would love to have her become a mother someday through adoption...
not having kids will not stop the disease a high percent of those with nf are "spontaneous gene mutation" my wife is pregnant and if are child gets it will just have to deal with it at least we are some what prepared for it. i say do what make you and your partner happy just be ready for it. how many of you wish you were not here. it is a relatively manageable disease and yes it sucks having it. but on the other hand it helped my mature quicker then some of my peers and helped me learn how to try to over come challenges in life. but if you dont want to possibly burden another with nf the yes adopt there are thousands of kids that need homes but being approved for adopting is really hard i know people who have been denied and there real good people
There is another option, but it has to be right for you and your husband from a personal, financial and religious perspective.
That option is having IVF with PGD (Pre-implantation Genetic Diagnosis). With PGD, they can screen each embryo for your NF mutation before implantation. Once the IVF clinic knows which one(s) come back negative for NF, they can select the one(s) they feel are strongest to implant and/or store until you're ready to have children (or have another child if enough come back negative). The PGD is something like 95-97% accurate.
Here's where the personal and/or religious perspective comes in. For the embryos that come back positive for NF or the IVF clinic deems too weak to develop there's a choice you have to make. At this point the embryo is a collection of about 16-18 cells. You can either have the clinic dispose of them, donate (the positive ones) to another infertile couple, or donate them to any IVF research the IVF lab/clinic is doing.
In the case of my wife and I, we donated the extra embryos to research.
I decided years ago not to father any children, hoping to eventually meet a nice girl who already had children or adopt. My sister decided to have a kid and now that kis has NF and all that comes with it. Ie; poor vision, learning disabilities, poor coordination.
Another thing to consider: Even if your kid is lucky enough to dodge the NF bullet, THEIR kid might not be so lucky.
Still, any child is a blessing , NF or no NF. I wouldn't trade Sarah for the world.
Hi Mrs Alicia
As for myself,when i heard my fiance was pregnant. I was really scared that the my child will inherit the neurofibromatosis gene.Well it turned out she didn't.she a very intelligence young lady.she's been a straight "A" student with AP classes about 5 classes.
so you see your child my be very intellectual...also there is the Pre-implantation Genetic Diagnosis that you guys can get...
I, myself decided I would not have a child. Yes, I put it this way, "that I would STOP at least 1 child from having NF". My mom died on a operating table, when they were trying to remove a tumor from her back. I was 8. MY MOMS mom had NF1 and so did her brother. My mom had 4 children. My oldest brother does not have it. The twins were born next & they both have it. One of them is mentally challanged and living in a group home. The other one had a brain tumor when he was 17. He almost died. He still has cognitive issues, they both have epilepsy.
I have Pseudoarthrosis, broke my leg the first time when I was 9 months old, and was in the hospital so many times.
At age 8, is when I decided not to have a child. I did not want to risk one more child from losing a mother early, (her pregnacies increased her tumors-in her spine?) I can barely walk now, and if I carried a child, I would feel devistaed if that happened to my child.
I do agree that adoption is an option.
but you have to do what you feel is right for you. Good luck in your decision,
I tried to get a vasectomy years ago. The docs told me that I had to be at least 25 with kids to be considered. I told them that I didnt want to take the chance of having a kid with NF. Now I have a BEAUTIFUL boy who may or may not have NF. No CAL spots but he has that NF body type. His tibias also look very slightly bowed. Even if he has NF, he is so full of light and joy that everyone who sees him is filled with his contagious happiness. Intelectually and even somewhat emotionally I would say "NO" dont have kids. But at the same time, you never know what will happen or how one little person can change your life. I will feel terrible if he has to suffer. I will never be sorry for having him tho.The most wonderfull moment of my life was the moment I saw him, still half into the world, lookin at me with his big blue eyes and that sly little half-grin. I knew at that moment that nothing could keep him down. Ever. My biggest fear is that I will die like my mother and he will grow up missing me. That would be the only REAL regret.
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