Incontinentia Pigmenti Community
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2207528 tn?1338950118

Incontinentia Pigmenti & pregnancy...

Was diagnosed at birth with IP, only have a few symptoms now. Frizzy hair, cone teeth, and the marble like swirls on my calf muscles.
I'm currently pregnant with my second baby. First one was born by labor being induced at 15 weeks due to the baby passing. Was a baby boy. Assuming his passing was because of IP. I'm hoping for a girl this time or to be extremely lucky and to have not passed the infected chromosome at all. Anyone talked to a genetic counselor and know the actual chances of passing it to the baby? By this I mean like a one in four chance or.... ?? I was unlucky the first pregnancy, in fact my obgyn told me to not try for another baby. She said she recommends I only try by doing in vitro.
Any success stories without in vitro?  I just found out I'm pregnant, only one month along.. Hoping for the best!!!!

6 Responses
Avatar universal
Hi, I just joined this forum. I am not pregnant or have any kids but I do have IP and am considering getting pregnant in a few years. I've heard both success stories and not so great ones. As far as I know here are your chances: 25% of chance it will be a healthy boy, 25% of chance of a miscarried boy, 25% of chance of being a healthy girl, 25% of chance of being a girl with IP. So, best of luck to you!!! Good luck!!!! Let me know if I can be of any help.
Avatar universal
Hi Ami-
I have IP with very similar symptoms as you.  My husband and I attempted to get pregnant naturally and our first pregnancy resulted in a boy with IP and we terminated at 17 weeks.  We got pregnant again about 6 months later and I have a healthy 9 month old son!  The statistics above are correct.  You can do prenatal testing to find out if the baby has IP.  This is usually done around 12 weeks through a CVS test.  If you're interested in more information about this, I'd be happy to pass along what I learned.  Over the past few years, I think I have researched and considered every option!  I highly recommend that you see a genetic counselor.  Your OBGYN should be able to refer you to one and quite frankly, if she didn't refer you to one after learning that you had IP when she clearly knows nothing about it, I would be looking for a new OB!  Sorry if that's harsh, but it's important to have professionals that are knowledgeable or at least willing to learn.  In vitro with IP is not so simple either.  Feel free to let me know if you have any other questions or message me.
Avatar universal
I am 39 with IP and I have now had every scenario possible with IP.  Ten years ago we had our first child, a girl with IP.  She turned out very healthy with a few missing permanent teeth and some dipigmentation of the skin.  I am also very mild as is my mother so I have found that there may be a possibility that the X with the IP gene in my family may be inactivated or "turned off.". We plan to research this more when my daughter becomes of child bearing age.  After my first daughter we then had a healthy girl without IP and then four years later a healthy boy without IP, no miscarriages in-between.  Feeling rather untouchable at this point, even though we were done having children, we left the door open to possibly get pregnant again.  I am now 18 weeks pregnant with my fourth child, and the worst case scenario has happened, a boy with IP.  We have been told that he will pass at any time and we are choosing to not terminate and wait until he does.  While we are in a very difficult situation right now, I would not change any of the decisions we've made because we would not have the three healthy children that we do today.  I wish you the best of luck.
2207528 tn?1338950118
I'm currently at 29 weeks. We found out at 18 that he was a boy. So far everything is good with this pregnancy. I have not had any genetic testing on him. Being that he's made it this far I'd assumed he didn't get an infected chromosome from me and will make it to term.
Am I right on this? I'm in my third trimester and he's still alive and growing normally, should I be concerned or is he officially made it to the safe zone of the pregnancy?

Avatar universal
Hi I  have up I pregnant at eighteen, when i was 17 weeks pregnant i lost all the feeling in my legs and had problems with my muscles i got my feeling back about a month after having my child. I had my little girl a week earlier because what i was going through, i am lucky to have such a healthy girl. After having having hr my up has got worse i now have problems with my hips, i was told my hips are too short and now muscles have got stuck in my between my bones. I feel pregnant again and at fours week i lost my baby.

Avatar universal
I'm going to be brutally honest....
Consider your other options before getting pregnant. If you're pregnant with a boy... you're body is most likely going to reject it. If you're pregnant with a girl, there is a very good chance she'll be born with epilepsy and have severe developmental issues. I understand the want to have a child but please, take into SERIOUS consideration what you may be not only putting a child through ... but yourself.
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