Posted by: jenjen

Deciding... - 10/05/05 03:53 PM

Hello Everyone,
I am posting this to various portions of the Ichthyosis Board as I am not sure where this topic fits.

I am new to the board. My name is Jenny - 34 year old with EHK and I have a 14 year old daughter with EHK.

I recently remarried in June and I am now tackling the issue of wanting another child but *NOT* wanting to have another child with EHK.

I've done so much research into PDG/IVF and I know that a Dr. Mark Hughes in Michigan has successfully assisted in producing children without EHK but of course it is extremely costly and insurance companies don't want to touch helping with the costs.

I have read past posts in regard to each of you and your personal choice to go forward with knowing your child has a form of ichthyosis, having or not having pre-natal testing, researching PDG, etc.

My main interest in this post is to speak to those that have EHK - dominant gene carrier and have produced children without EHK. I have been told it is 50/50 each time I become pregnant.

My question is what are your thoughts aobut getting pregnant, being tested and aborting the pregnancy until you get a pregnancy that does not have the mutated gene or does it just not matter.

Any feedback would be greatly appreciated.

Warm Regards,

Posted by: jana

Re: Deciding... - 10/06/05 06:22 PM

Hi, I'm Jana and I am 41 yrs old and have EHK. I have 3 children, a 16 yr old son with EHK, a 10 yr old son with normal skin and a 2 yr old daughter with EHK.They are all beautiful and healthy. I think its a personal decision to have children or not. I have always wanted kids, even knowing they would have a 50/50 chance of having EHK. Of course, I would rather all of my children have normal skin, but they are all such a blessing and a joy to me that I would not change my decision to have them. I can't imagine life without them in it. Personally, I could never choose to abort an baby with ichthyosis over one with normal skin because if my mother had made that decision , I wouldn't be here, and I love life. I am only speaking for myself, and not other people. I know this is a hot topic but I feel that a life begins from the moment of conception and is a creation of God, not to be destroyed because of a defect. As I said, I am not condemning other people who make other decisions because I am just giving you my personal feelings on this topic.I had a stillbirth at 25 weeks due to a chromasomal defect not related to ichthyosis and a m/c due to low progestrone problems before my daughter was born the following year. When I held my lifeless baby boy in my arms, I realized what a blessing it is to hold a healthy baby in my arms, not matter what its skin looks like. To be honest, I didn't find it that much easier to take care of my son with normal skin than the ones with EHK because to me, EHK is normal. My son with normal skin was a live wire when he was about 2 and into everything much worse than my two with EHK and he had to have tubes in his ears when the other two never had much problem with ear infections.It was nice not to have to grease him down and to be able to watch sweat drip off his face!LOL. In fact, sometimes I think he feels alittle left out since he has normal skin. He even asked once if I adopted him! Each child comes here with their own problems, whether its a skin problem or some other physical or mental problem. In the end, it is a very personal decision between you and your husband to have kids or not. I wouldn't have another one if you really don't want one with EHK, but that is strictly my opinion and I think that is what you were asking for. So, before anyone gets upset at anything I have said , please know that I am not condemning anyone for their own personal decisions to have kids or not or to abort or not, because I don't have to live with the decision. It is truely a decision that has to be made individually. Thanks for asking my opinion on this subject and good luck in whatever you decide! Feel free to e-mail me or address it here if you have any questions. Jana
Posted by: jenjen

Re: Deciding... - 10/06/05 08:48 PM


Thanks so much for responding. I most certainly *do not* judge anyone for there choices. I just wanted to get different opionions.

I was extremely ill with EHK the first 6 years of my life and spent so much time in the hospital. My daughter wasn't as bad as myself at birth but she was in NICU for over a week and we sure have had our struggles.

Do I love her? Of course. But I also know the struggles as a 14 year old she goes through. We both have EHK over our entire bodies - minus our palms, soles and faces. Of course there are areas that are much better than others (example - joints yucky like wrists, knees, but legs smooth).

Anyway, I am going to a pediatric endocrinologist at the end of the month. I have found a Dr. Mark Hughes in Michigan that has successfully done the PDG on EHK so that is hopeful but of course it doesn't mean you will get pregnant with IVF and the procedures are extremely costly. So I am researching and thinking hard.

I am always amazed that insurance companies will cover all the abortions you want, elective and non elective but they will not cover IVF unless you are infertile.

Oh well, this list is super great, I love connecting with folks for support and feedback.

Again, thank you for taking the time to respond to my post.

Warm Regards,

Posted by: mommyh123

Re: Deciding... - 10/11/05 02:32 AM

I have had 2 children, the first with and the second with clear skin. I never gave a second thought to having a second child because of my skin condition. It is a very personal decision, but all has turned out well in our house. By the way, they are both girls.
Posted by: jenjen

Re: Deciding... - 10/11/05 08:51 PM


Thanks so much for your reply. I am going to a Reproductive Endocrinologist on the 25th to discuss all my options.

Maybe for me it is different because my daughter and I have EHK pretty much all over our bodies. From the neck down. We do not have it on our faces, palms or soles but everywhere else.

With both of us, we have gone through serious struggles in dealing, coping and managing our condition.

I find it incredible the varied severities of EHK or any ichthyosis disorder and further I am more intrigued at the choices each of us makes.

All the feedback has been extremely helpful and encouraging.

Thanks again