Hello Everyone,

Just a quick update that my husband and I found out we are pregnant. I am the one with EHK and I also have 14 year old daughter with EHK as well.

I go to the doc tomorrow to see how far along I am. We decided to have genetic testing done at 11 wks to determine whether the baby has EHK or not.

I will keep everyone posted.

Jenny

Good luck

How are things going with you, Jen?

I've been thinking about you.

Things are going okay. Besides beng green a lot I'm hanging in there. The genetic testing is going to be scheduled for the week of March 7 -- I'm really looking forward to finally getting it done.

I feel very reserved in being happy for the pregnancy until all the testing is completed. I'm taking good care of myself but feel stressed and nervous until it is all done.

I can't tell you how much I appreciate you asking me how I am doing. I am moved. It seems no one wants to chat with me because I am having the testing done and then deciding what I'm doing once I receive the results. I know it is a personal issue for everyone but I thought I might support on here but I guess I made everyone angry instead which was not my intent.

Thank you again for thinking of me.

Jenny

I am glad you posted here again, Jen. Congrats on the pregnancy. I've been thinking about you, you hadn't posted in a while. Was wondering what your decision was going to be, then saw this post. You're in my thoughts and prayers. I hope all will be well for you and your family.
Keep us all updated.

LauraAnn,

Thank you for posting and checking on me as well. I will most certainly keep everyone updated about the results of the test --

We didn't think I would get pregnant so fast -- but that is just fine with us as well as we ain't getting any younger [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

Thank you again.

Jenny

Hi jen
I dont know you but saw your post and I honestly believe if I were pregnant as you are I would get the testing done myself. My little guy is 5 months (he is the one with ICH) and I have two others one is 9yrs and my oldest is 20. This was such a big shock to my husband and I. We have never heard of this before and it is not on either side of our family.
Everyone has to make their own choices (no matter what it is in regards to) and not worry about what others think. You will be in my prayers.

Jen, we just went through your situation. Elliot was born Dec 24th with what looks to be a pretty mild case.

It is a hard thing to reply to - even having been there myself, knowing the 50/50 chance, it is still hard to know whether to say "congratulations" or "I'm sorry" because the reality is somewhere in between. I'm glad that you're pregnant, yet I know how worrisome it is that you could be inflicting the disorder on your child. At the same time, I can relate to the next step - if the baby has the disorder, what do you do with that info? Prepare for the baby, or terminate? What a horrible decision to have to even contemplate. And it isn't something anyone but you and your husband can decide.

For us, the gene isn't known, so we couldn't do any testing for it at all. Even at 33 weeks, it was uncertain whether the baby had it from doing an ultrasound. Much too late to terminate a pregnancy, even if that was what we wanted to do. While we had decided to continue the pregnancy even if the baby was affected, that bit of knowledge helped us determine how much prenatal testing we wanted to attempt - fetal biopsy or fetoscopy were about the only other options for us, but we didn't do them because of the risk of miscarriage outweighed the usefulness of the information.

If you ever want to talk, email me.

Jennifer
Brian
Nathan(3) and Elliot(8 weeks) - ichthyosis-en-confetti

Jennifer,

I didn't realise that you were having a baby...congratualations...

And I appologise if I encroached on your new website for new parents (when I asked if I could become a member of it) ...I realised later it was just for new parents...

so I won't bother getting on it...

Pauline...congrats again...
Pauline

Pauline, everyone here is welcome on that site. I just created it so we could post pictures and talk about non-ichthyosis things or even some ichthyosis things that you wouldn't necessarily want to be found on a Google search.

Apparently, not many people want use it. There are over 50 members, but nobody is posting there. Go fig.

Jennifer, in that case....How do you find this site...

can you email me the details please...

kimmy89@optusnet.com.au

thanks again

Jennifer,

Thanks so much for your reply. And yes, it is a very stressful situation to be put in. I feel it is important to have the prenatal testing -- yet part of me is so scared for the results. I so want a baby and yet, I don't want he/she to suffer what my daughter and myself have gone through. It isn't a simple or easy decision.

I totally understand what other parents have faced and I completely accept their decision(s) to continue a pregnancy knowing the struggles that child will face, and what the parents will endure as well.

[img]http://www.ichthyosis.com/ubb/frown.gif[/img]

Anyway, I will let you know of the results. Thank you for reaching out to me. There have been a wonderful few on this site that have really made me feel a wee sense of peace on what I'm going through.

Thank you again,

Jenny

Hi Jenny, I am a mum of a 17 month old son with x linked ichthyosis and although I am fully aware of the different types and how bad they are to certain extents and realise EHK is a far worse type then x linked i felt moved to post here due to what you said above.
If by making the decision to get the testing done you made everyone angry then so be it, hopefully people will come to realise that it is different for everybody and that the testing is a very personal choice. At the end of the day what may be simple for them isnt necessarily for another. I have watched over the past 17 months and struggle with my little boy and getting to terms with his diagnosis (i had not even heard of ichthyosis beforehand). Newborn babys are not the easiest of people to communicate with at times and it is made harder when they are born with any kind of condition.
I have always said that I would never have any type of genetic testing if I were to fall pregnant again BUT i think that is mainly due to the fact the results would open up a whole new world of thinking to me and I would be scared of the answers. It takes a brave woman to face up to reality and do what you are doing, and as said above it is a hard choice. As a mum it is perfectly understandable to me why you would go for the test, no mother wants their child to go through suffering and as you have EHK yourself and have watched your daughter grow up with it , it makes it harder for you knowing what you may be going into.
You could draw strength from the fact that you and your daughter have grown up with it - but then I dont want to sound patronising either as I have not experienced EHK firsthand.
I really do wish you all the best and for now I offer my congratulations until you know what the future decides - I hope this board can be as good a help and supportive to you and you find as much comfort in friends here as I have since my sons diagnosis.
All the best - and i really hope you dont mind me posting here [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
Vicky x

Vicki,

Thank you!!!! Thank you for posting. I do feel brave at times but a coward as well. I am just trying to remain strong, take care of myself and the wee bean until we know all the facts.

Thank you for posting!!!

Warm Regards,

Jenny

Well I really do wish you all the best from my heart hun [img]http://www.ichthyosis.com/ubb/smile.gif[/img] Keep us updated on how things are going and remember dont let anyone stress you out its not good [img]http://www.ichthyosis.com/ubb/wink.gif[/img]
Vicky x

Jenny,

I just wanted you to know that I'm wishing you well this Tuesday. Please let us know what happens.

Jennifer

Hi Everyone,

Just a quick update since everyone has been so so supportive of my journey right now.

I had the cvs test on Thursday the 9th. Everything went fine, no major complications and all the samples went off to their respective labs.

My genetic counselor called today to that me know she talked to Dr. Sherri Bale at GeneDX and they have received everything and are working on the results.

Dr. Bale told me the results should be ready in a couple of weeks and the other results for any chromosonal disorders (since I'm at that age) and the sex of the baby should be ready by Friday.

I will keep everyone updated as I learn the information. Thanks again for thinking of me.

Jenny

...