I have nf and want to have a baby

I am getting married soon and I have always wanted to have my own baby but info not know if I should? Can you tell me your stories.

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I have NF and I have 1 (now grown) son and he does not have bumps all over like I do , it's a 50/50 chance that your child will have it, my mom had it but I'm not sure if anyone else in our family does, I'm an only child.

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NF and pregnancy hormones are not always a good mix. You can't predict how severe the child's NF will be if you pass it on.
This is a very hot topic for a lot of people. My father passed it on to 3/3 of his children and the severity of our conditions is different. We chose not to pass it on. But that was us. It is a decision only you and your husband can make, with help from your doctor. There are positives and negatives to either decision. If you chose to have a child and their NF is severe you may feel guilty, knowing you caused their pain. If you don't have a child there is a chance you will regret not giving your parents grandchildren and there may be a point when you realize that you are completely alone. ( this is the first time I admitted that downside of my decision). But for ME no kids was the right choice

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Touchy subject on this site. But here is my story. I been married 15yrs. We have two girls age 11 and soon to be 8. Doc says they r not sowing sigms of nf..but they hv a few freckles that concern me. Plan to tk to a nf doc this summer just to get second ooinion. Bith are very active in sports and are very smart kids. No learing prob. Me..i currently hv no med issues with my nf only cosmetic. I did not hv many b4 my preg. During both my preg it made the nf angry..got more bumps. Idk knoe th this wud happen..but it did. So be aware that this could happen. No med issues with my nf during my preg..only moring sickness..uhh for 3mons.. we do tk a risk of passing this on to our child..worse or mild than what u may have. Wishnyou the best of luck in your decison. Having children is a wonderful journey to go through. Congrads on ur engagement..best of luck..enjoy ur time as a newlywed...before kids..because after that...no sleep and less adult time..lol

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Have you looked into pgd ivf? Its a type of ivf that screens for the disorder and they only implant you with healthy nf free eggs

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Thats crazy how they can do that with the eggs..but no cure for nf yet

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As i have posted in past. I took the chance and after one miscarriage I had my daughter at the age of 41. While i did know the stats
I left it in gods hands. My daughter will be 5 in october. The only signs she has is several cafe spots. Her doctor and I agreed not to do any scans until after her 5th birthday. She has been seen by an eye doctor but at that time everything was normal. She has
had normal growth development and sh e is right on track in her pre k class. I do realize everyone is different and things can change. I take one day at a time.

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I admit I do twitch when people say god made their child have or not have it as I don't think god would pick and choose who gets it and who dsnt, how would he decide whether a unborn child free of sin has it or not? No it's not god it's luck. God just gives us the support love and ability to deal with what happens I do not believe he choose for me to have this for my friend who had nf2 to die...
But he did bless me with a strong mother a great support network

I do not judge people who risk it but for me it's too much of a risk to take if it was risking my life and mine alone fine but I can't help but feel I've failed my child before I've even started if I am willing to take such a big risk with their lives from the start...

Wow I have never actually said that properly 0_o

This is how I feel about me risking not how I feel about others who risk it so please don't think I'm judging anyone

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Well said little Laura.

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Thank you so much everyone... This is helping so much

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I SAY FOLLOW YOUR HEART!. I am so glad I had my daughter she does not have NF and I am glad she has given me 3 adorable grand kids no NF. I am sure if your child had NF you would still love them just like your parents loved you!. Each and every child is a gift to love and be loved by.

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I also have kids now 28 and24 both of my kids or N.Ffree and do are my both my kids my grandson is now 9 years old my granddaughter is now 5 and both of are also N F free.my father and i are the only ones with N.F.It'd up to u to choose they might I'm here at it and they might not.The Decisionis only you a.d your husband it is up to u.

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jojowman - of course if the child had nf he/she would still be loved just the same but I dot know about anyone else but I couldn't deal with the guilt that I caused them to have nf they were suffering because of me and a choice I made yes that choice gave them life but I'd hate myself which is why I couldn't do it

I have lived through a lot of pain with nf I have had operations since birth, I am in pain most days and can't walk far. This is what I base my choice on they could be as bad or worse and I wouldn't want that for them :(

Like jojo and everyone has said it's a choice only you and your partner can make

If you want to risk it ensure you know the risks and understand them and can accept the worse case scenario if you can and you feel you want to risk it then that's your choice do not let anyone tell you it's wrong or judge you

If you want to try pgd or other methods same again

And if you want to adopt that's great too

There's options you can be parents and if you want to you will be one way or another xxxx

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Both me and my sister have NF. Both my sons are fine and so are my grandchildren. My sister son has nf 1

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I loved children enough not to have any. A loving parent puts their child's needs first. No child needs to be born into the uncertainty that NF brings. Let me preface me next sentence by saying I HAVE NOT SEEN THIS ON THIS SITE AND I AM NOT ACCUSING ANYONE HERE OF DOING THIS. I become annoyed when people choose to take the gamble and lose and then whine about what happened to their poor baby. The ones that say it is so hard to watch your child suffer. I do not think people who have kids when they know the risks are selfish. As we've all said, this is a real hot button topic. Making an informed decision is vital.

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Kaykay --- as others have said you need to make the decision that's right for you.

You can choose to go the natural route with pregnancy and know there's a 50-50 chance your child will have NF and there's no knowing in advance how mild or severe the case will be.

You can opt for IVF with PGD, where eight days after fertilization they extract one cell from each embryo and genetically test it for NF, then implant only the healthiest NF-free embryos. The pro here is that you know that the child will be born without NF. The con here is cost (many insurance companies don't cover IVF without a history of infertility, let alone cover PGD), the risk that the pregnancy won't take, and the risk that all the fertilized eggs will test positive for NF (since there's a 50-50 chance each one will test positive, there's a chance they could all test positive (think of it this way, flip 10 coins, although it's unlikely they'll all come up heads, the chance is there). I have NF-1, my wife does not, this is the route we chose and you can see my son in the photo with me from last summer. The IVF/PGD was a rough process at the start with the frequent visits the IVF clinic requires, the wait to start the process until the PGD lab says they're ready to go, and the battle with the insurance company. But in the end, it's all worth it.

There's also the option to adopt, if you don't want to deal with pregnancy or any of the other issues mentioned above.

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Ivf/pgd is actually not a realistic option for many people, as most can not afford it.
It's not the easy answer here.
I choose to have children, and I don't regret it.

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Very touchy subject indeed....

For me, after a LOT of very careful consideration and years of pondering it out, I chose to not have biological children. I could never, ever live with the knowledge that I willingly risked my kids getting this. I think it is my job to protect my kids- I love them even though I don't know who they are yet- and my number one step in protecting them is in not carrying them myself. I have a pretty strong belief in a loving Heavenly Father, and I think that he will get my kids to me through whatever means available. for me and my husband, that is adoption. We are pretty excited for the chance. :) Whatever problems they may have, I will turn my life inside out to help them with it... but I will also rest easier knowing that they didn't get MY illness and that I did what I could to protect them from it.

Please understand that I am not knocking those who choose to risk natural children. I think it is 100% a personal choice. You build your family through whatever means feels right to you, and never let anybody tell you that you made the wrong choice. It is your family, therefore it is up to you and your husband, and nobody should say boo to you no matter what you decide. ;)

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How I look at it is do I wish my brother and I had never been born? Or that my mom and two uncles had never been born. Or my Grandpa had never been born. NF has been in my family for at least 4 generations. I would never wish any of our lives away. Thankfully very few of us have had sever complications, for that I am very greatful and blessed. My grandfather passed his NF to 3 of his seven children. My uncle passed it on to one of two of his kids. My mom passed it on to both my brother and myself. Yes at times I deal with self image and have strugled greatly to learn in school but I am so glad that my mom decided to give me life. Dispite the risk for myself personaly I would will have my own children if I marry someday.

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leahDixon,

I agree with you. Ivf/pgd was not an option for me. I did take the time and think about what the risks were.
I talked to my pcp, and ob along with my husbands pcp even though he does not have nf i wanted to know what he thought.
We also took the time see a peds doctor. They all told me the risks and to follow my heart.

I

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I will never regergt having my kids. Because if i didn't have my daughter. I would have. Never had my grandkids. I pray oneday that my son will also give me grandchild or 2.BUt to say we where selfish for doing it is not right.weather u chooses to have kids are that is yourchioce .And maybe chooseing not to have. Children is ur choice. But is is not everybods choice.

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