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How can I lower the risk of passing IP onto my children?

I'm an 18 year old female.. A few weeks after birth I was diagnosed with IP but didn't even know the name for what I have till a few minutes ago when I decided to look up on it. I knew that there was a risk that it would be passed on to my children (not that I'm planning to have children any time soon). I had no idea that the percentage was so high! Most symptoms have cleared up, I only have dark, birthmark-like marks around the sides of my stomach, one adult tooth missing (but my baby tooth is still hanging in there) and my nail deformities have only just cleared up (excluding one nail on my big toe).
I'm shocked to hear that there's a 50/50 chance of passing it on to my children and was wondering if there was any type of cure for this condition, because I do not want my children when I chose to have some, suffering from this condition as it has made me very self conscious of it for years..Also as it is fatal for males, I would not wish to even attempt to have children knowing that the percentage for a miscarriage is so high! That is something I wouldn't wish anyone upon, let alone go through it myself..
2 Responses
1171787 tn?1295546231
Hello, I am a 25 year old female with IP. I have a daughter who has the condition also. We both have it mildly, she is slightly worse than I am. We both have the typical rash and wavy fizzy hair. My daughter also has problems with her teeth and a small bald spot on the crown of her head. All in all we are doing really well. besides some dental work for my daughter, she does fine. I recently lost my son, Hunter, to IP at 17 weeks pregnancy. We were very devistated. It is so hard.
I know that there are options us women with IP can choose when trying to concieve. There is IVF with PGD, which basically fetilizes your eggs outside the womb after about five days they take a cell from the embryo and test it for IP. They only insert the ones that do not have it, discarding the others. This can be very expensive and morally questionable but it is a sure way to have a baby without IP. There is also a drug called Clomid which makes your body produce multiple eggs. You then have sex and fertilize the eggs and you have a much higher chance of sustaining a full pregnancy. It does however increase the risk of having a girl with IP. Personally I would not trade anything in the world for my daughter :) You would need to see a fertility specialist and they can give you more options.
My husband and I are currently TTC after the loss of our son naturally. 1) we dont have the money to engage in expensive fertility treatments 2) I am not sure that I am morally sound with IVF with PGD   But that is not to say that it isn't the right choice for someone else. The is always adoption too, but that can be more expensive than fertility treatments. I feel like I am strong enough to possibly go though losing another baby. It broke my heart to lose our son. It is so sad that as IP women we have to go through this.  
Avatar universal
Hi sv -

You have 2 options for having healthy, IP-free children (your own biological children that is, not counting adoption & using donor eggs - another woman's eggs - of course) -

* One, you can choose to try naturally, then have a CVS test when you're about in the 3rd month of pregnancy, and then terminate in the event that the IP test turns out positive
* Or, you can choose to do the PGD procedure

One thing the previous poster mentioned, taking Clomid, is NOT a way to decrease the risk of your baby having IP.  Taking Clomid does make you produce more eggs, but still half of those eggs have IP, your risk is the same.  It does not decrease the risk.  Clomid is used for women who don't produce enough eggs on their own, it is NOT used for decreasing the risk of passing on genetic disorders.

Personally, I've done both the natural and the PGD options, and I think they are equally hard.  They each have their own challenges.  If you choose to try naturally, you must be prepared to terminate in the event of a positive result.  For a boy, that's not really a problem, since almost all boys die anyway.  For a girl, some people do not feel comfortable doing that.  If you don't, then your only option is to do a PGD.  For the PGD, it's possible that you might end up with extra embryos, and some people do not feel comfortable simply throwing them out.  If you also don't, then you can choose to freeze them for having your 2nd baby later, and if you still end up with extra, then you don't have to throw them out - you can choose to donate them to research, or to put them up for adoption for another couple.

Having kids when you have IP is tough anyway you go about it, but of course, hopefully ultimately rewarding in the end, when you have an IP-free baby and know that you conceived responsibly and prevented passing on this potentially disorder.  
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