having children if you know you have Nf1

hello everyone,

I'm new here. i'm a 31 year old female who was diagnosed with nf1 about 3 years ago. i'd had cafe ole spots on my body forever but never paid much attention to them thinking they were just large birthmarks.

it wasn't until I was in my mid twenties, that i couldn't seem to get rid of the 'rash' on my chest. Doctors gave me creams etc, not knowing what it ws until i finally went ot see a dermatologist who knew what it was.

obviously my life hasn't been severely affected by it, but there are definitely things that make sense now.

i was told that I have a not-so-sever case... which I don't when i see what some people have. The bups are getting bigger and i get more of them as I age.

My first question may offend people, and i really hope it doesn't, its just something thats been on my mind.

Neither of my parents had it, so I guess i'm a mutant, ha ha.

But, since I know I have it, i guess i wonder if its responsible of me to have children knowing there is a 50% chance of having a child with NF1???

My life hasn't been awful, things I'd like not to have, but what if i have a child and their condition is much worse than mine? i would hate to do that all because I wanted a child for my own satisfaction/ gratification.

i'm really struggling with this at the moment.

Edited November 30, 2008 at 6:54 am

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71 replies. Join the discussion

I think it would be ok even if you do pass it on

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Thank you so much for your replies everyone.

I'm sorry I didn't have a chance to reply sooner.

I'm so glad i found this site. It's so frustrating trying to explain to family and friends and they just tell me things like, "At least you have all your limbs" or "at least it's not cancer"

I'm not trying to sound selfish or high-maintenance, I just wish that there was someone I could talk to who understood... or people who understand that its not just a 'bad skin rash' ugh..

Sorry, you all sound so positive, and it just gets me down a lot.

Like I said before, I didn't even know I had it until I was 27 or 28, but it it getting worse and I'm only 31. I still think its not that bad when I see what other people have so I'm sorry if i sound like I'm complaining over nothing.

Thank you again so much for your answers! : )

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I'm sorry I didn't see this thread sooner.

I'm 39, married with a mild case of NF1. My younger brother has a double-whammy of a bad case of NF1 and MS.

My wife & I opted for PGD and IVF (had to go the IVF route with a health condition she has). The PGD and IVF were successful. Our son is a month old and so far has no signs of NF.

If you're going to opt for this and live in north/central NJ, I recommend RMA-NJ (www.rmanj.com) for the IVF, they treated us fantastic and she got pregnant on the first cycle.
In terms of the PGD, we had a fantastic experience with Genesis Genetics (www.genesisgenetics.com).

If you've got any questions, feel free to ask. I'll have to update the picture here to show me with the baby instead of me with the cat.

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I have NF1, but didn't know about it till my second child was born. I just thought I had ugly skin, but I never stressed about it. I guess it bothers me more now as I get older than it does now. My son has a mild case of it, not problems as of yet. He has two children without NF, and one on the way. His older child does have Asperger Syndrome, but does not have NF. My point is that no one know if their children are going to be borned without problems. There are so many things that could go wrong. My mother has NF1 and has the small tumors, but out of seven children, I'm the only one who has this. Just be awared of the disease and what to look for. From what I understand there are lots of people walking around who are completely unaware they have NF.

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My heart goes out to all of you who found out you have NF so late in your life... It has been difficult enough for me living with it since birth, but to find out so late in your life especially when you are making the decision to have children... Its horrible...

I have NF1 and Pseudarthrosis its not mild... I have had operations on my limbs since I was 16 months old. I have had many Neurofibroma's removed and many skin surgery's. Fortunately my NF was spontaneous so neither of my parents nor my sister have it.

I am 21 now I have struggled through life, through schooling and through surgeries, however because of this disorder I have close bonds with my family and a sense of strength others may not have. I have been able to help other people with NF thanks to my experiences and am a much stronger person.

I have adhd which many with NF1 have... along with many different learning difficulties which is why I struggled through school as them combined with the added absences caused my education to suffer. However! I am now at university and living away from home which still shocks me to this day! I have been told all my life by schools that I wouldn't make the grade, how I wouldn't achieve much, though its only average I came out of schooling with all B's in my GCSE's! I loved pointing this out to them!

I have battled through allot of the difficulties thanks to the support of my family and couldn't have asked for more supportive and strong willed family.

The only thing I feel sorry for myself for is the future decision of whether or not to give birth. I have always wanted a family and feel I would make a fantastic mother... However I am not sure whether I could chance it... I have seen the most extreme cases of NF and the most tame, (I fall somewhere in the middle)
I know how lucky I am not to have a much worse case of NF, which makes me worry that my child may not be so lucky...

Like others on here have said its the roll of the dice..I am not sure its a risk I could take, for if the child did have severe NF, I would feel guilty for the rest of my life (as extreme as that sounds) on the other hand if they did have NF I would be the best person to support them as I have lived though it myself... I just don't know...

Its each individuals decision to make, experience of NF is a great factor in this, your more likely to be willing to take the risk, I have seen all sides of NF and I'm incisive...

The fact this is hereditary is the only thing I allow myself to moan and feel sorry for myself about as everything else about NF I feel grateful about, my view is it could be much much worse... So even though I have pain frequently and some days I cant walk I am very lucky!

I just wish it wasn't hereditary and that I wouldn't have to make this difficult decision with my partner one day... I feel sorry for him the most as I have known this for years... I am on the fence partway considering adoption and part considering having the child but only if he truly understands what it means if the child did have NF.

I know how much my parents have had to give up for me I know I could do that same. What you should ask yourself is could YOU cope? are you prepared. The child may not have NF or only a slight case. Yes there is a change they MIGHT have a more severe case, the question is this a chance YOUR willing to take? If you can love the child unconditionally then the answer is already there...

I am part writing this in an attempt to try and help and partly to help clear things in my head... I just hope I make the right decision in the future.

I don't know if I helped at all but I fell a little better by posting this!

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My first daughter does not have it. My new baby is 3 months old and showing signs. I can only pray if she does have NF that it is as mild a case as can be.

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I have my fingers crossed for you! I hope she has the most mild case possible!

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Hi Cara

First, I don't have NF, my 12yr old son does. I will tell you what I plan on telling him when and if he asks me the very same question. It is up to you and your wife/husband. It is a very personal decision that needs to be made by the two of you. I think with the varing degrees of NF, there is no right or wrong answer. Its not as if you know for a fact you are bringing a child into this world who will be ill and suffering. As a matter of fact the chances of that are very very low. If I knew before I had my son that he was going to have NF and Asperger's I still would have had him even with all of the problems that have gone alot with that. I believe the world is a better place for having him in it and am sure he is here for a reason and will make a big difference in this world.

Do not worry about what others will think or say, do what is in your heart - you know what you can handle and do.

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i have nf 1 3 kids now 27 28 30 only one of them has it and a very mild case..it can be a hard desicion to make i would not go back and change anythink it also got passed down to my sister's grandson none of her kids has it it was passed on to me by my day did lose 1 sister to the brain turoms all cases are different its like the roll of the dice you never know what you will get hope i did not scare you good luck which ever way you go

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I have mild NF1 but my father and two sisters have severe symptoms of it. They have undergone numerous surgeries and this dreaded disease has had a huge impact on our family. I have learned a lot about this disease, its gene, options for treatment, and choices available for having healthy kids. In thinking about having children we, of course, understood the 50-50 thing, but the more difficult issue is that my mutation which is the same as my sister's have, could result in a baby with severe NF. THAT part was unacceptable to us. We looked at adoption but decided we wanted our own biological children and didn't even want to consider taking a chance and thinking about the risk. So, we did IVF and PGD. Twice now. Resulting in two children - our little girl age 4, and now a new baby boy born in October. We used our local IVF clinic here in Illinois, our insurance covered 80% of the cost, and we chose a great PGD lab in Michigan (Genesis Genetics) to test our embryos. Everyone was wonderful and we were very happy. I made 11 eggs and 5 of them didn't have my NF mutation. We took two and froze three. Last January we took two of the frozen ones and got pregnant a second time. (we still have one frozen embryo but probably are done now. :-) ). This option is clearly not for everyone, but we think it was the best decision for our family. I don't think the smiles on this year's Christmas card could have been any bigger. God has been good to us. Hopefully, you will find the best choices for your family and be as blessed as we.

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I used to be of the opinion, absolutely not way was I going to give birth...Because after my struggle though I have turned out fine, I didn't want my child to live what I had.... But now... I am on the fence and learning more towards maybe, especially if I stay with my current partner, he is strong and understands many things about NF through seeing me go through hell. I have shown him pictures and videos of me growing up showing all the operations and procedures, how bad it gets and what to expect. I know together we could handle it...the painful thing is what hell the child will have to go through if he/she has it severe like me...

I am not sure... we shall see... I have always wanted a family... so lets hope

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I didn't know that I had NF until I was expecting my first and only baby. I also new that I had the brown birth marks from one end to the other, but didn't know what it was until I was expecting and little red bunps start appearing all over my stomach, I was in my 8th month and my Doctor, told me he wanted me to see a skin doctor after I had my baby. That is when I learned all about NF, the skin Dr told me that if I had one healthy baby. Then to be satisfied with that and not to risk another baby. Well it turned out that my one baby, a Daughter, had NF also. And she has had many compliations from NF. She has a rod in her back, because a tumor was causing her head to start leaning to the side. She and I both have AD and ADD HD problems and I have always had LD problems, of course when I was growing up, they didn't know what LD was. They just new that I couldn't do well in regular class, but was't slow enough for special ed, so my whole school years I struggled. I gave my daughter all the information about passing NF on to her
Children, but she and her husband deceided to have Children, the first two are boys, and do not have NF, with each baby she was informed that everytime she had a baby, it increased her odds of having a Child with NF, well her third and last baby was a girl with NF, right now she just has the brown spots, she is 11, so I haven't told her and I don't think my daughter has told her , the tumors we keep getting and some of the one we have are getting larger are NF. I know most women want to have a baby, and I might have had a baby even if I knew about NF before I had my daughter. I do know that is when, my tumors stated and so did my daughter. In fact she got more with every pregency, Please forgive me for sounding so critical, My husband and I love babies, I just wanted to tell you our story,since you posted a question.

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If I have a child I will only be having one and adopt the rest, because if I have even one healthy child it will be a miracle any more is pushing it in my view....

If the child has NF which I hope so much it dsn't then I will fight with him or her every step of the way! I will still adopt other children.

I want a family even I have to adopt!

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I have had NF since I was born, I was diagnosed at 4 years old. No one in my family has it either. so I'm a mutant too! :) haha I have been struggling with this question since high school. I am worried to death about this!! Honestly I want children of my own more than anything! Let me give you my advice. I would have children if possible! There are procedures, expensive, but personally I think they are worth it, but procedures that can detect which eggs will have NF and which will not. This can be helpful in providing a healthy baby! Just a little FYI though. Yes there is a 50% chance for children to have it, but there is also an 80% chance that it will be worse for them than it is for you. Currently my NF does not really affect me too much. I have to be careful not to stay in the sun too long, I get major headaches quite frequently, but other than that I'm pretty normal I guess. I have two brain tumors, but they are non-cancerous. My biggest fear is that my children will suffer. However I will, and I recommend to you if you are willing, looking into procedures I have spoken about. Also there is always adoption! There are so many babies out there who need good homes! Best of luck to you!! Let me know if you need any other advice!

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Dear Carla, I am also 28 years old nf1 woman and deadly want healthy chidren. I have searched a lot and gone to several genetics. Finally I have learnt that there is a recent but an expensive method which is called PGT. Pre-implatation method helps the geneticly disordered parents to have healthy children with a chance of 95%. In this method, firstly the doctors need to find the mutation in ypur DNA. Then, they can seperate this mutation and fertilize the health ones outside. Later, they do some other genetic tests on the fertilized eggs, and choose the ones which does not carry the nf, and implate it to you with a needle. THrough this method you can have health children, even twins. I am thinking about experiencing this method. It is expensive but ı think, it worths. YEt, I am very curious about the complications during pregnancy on my health. High tension and rapid multiplication of tumors are the worst ones. What I really need to know is, how rapid do thay multiply, and can they be cancerous... So dear friend, we are the ones who are to be really strong. But ı believe that the courage we need is in our blood...

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I've had two children which are now 19 and 21...I'm 41... I really didn't get a lot of bumps while pregnant.....My oldest son has it and my youngest son does not. I'm hoping his will not be bad like my mother's you can really tell she has it and she has always had problems (ie...always at the doctors.) Mine is not bad yet....but I do see the growing now. I remember when I was told...I guess I was around 5 or 6...and I do remember asking the Dr is I would look like my mom when I grew up.
After my second son was born...I had my tubes tied. As I didn't want to take another chance. I can tell you my cousin who has NF..had two children and for her ...she got a LOT of bumps durning her pregnancy.

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Hi I am Sallyann Rivers I have a son with nf1 I had not a clue what this is but when my son was born 3 day later they tell me my son had it he was cover in spot from head to toe how did he get it i donot because i do not have his dad do not have it nobody in our family ever hear of it so it a good chance your baby may not have it Ihave six children and enoch is my 5ft pray and asked God not for your baby not to have it.God bless and done give up hope

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Hi my name Is Sallyann Rivers I am enoch mom the litle man you see above he going through the same thing you said so I know how you feel God bless and keep on going stroung.

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Hi I am Sallyann Enoch mom thankyou for what you said You just make my sence of mind clear I thought I was the onlyone feel that way thankyou again

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I have nf1 or nf2 it so mild i dont keep up with it, i may be prego rite now, but i'm going to strees it to much about the baby having nf, it may make him/her a better person.

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