Any Moms Here with Goltz Babies?

[spunk]

From what I have learned, most people don't even know what it is - it is such a rare skin condition that causes limb abnomalities and various skin inconsistencies where the top layer of skin is absent on certain parts of the body making my baby very prone to infections and skin trauma, not to mention healing for her can take forever ...

When I was online looking for information on Goltz after learning that is what my daughter has, I barely found anything, and what I did find was mostly techy med stuff - I was thinking of starting a blog with my personal experiences with Goltz so any future parents looking for info won't feel as alone as I did - there are so many added considerations with Goltz babies because they are so prone to infection - for example, they get diaper rash easily so sometimes even wipes are too harsh for their skin, they need constant moisturizing and often their skin can't take normal baby products ... I have found just instinct to lead me to solutions in responding to various Goltz-related needs ... and there are so many fears - she will undergo surgery at 1 year to separate two fingers and remove some tissue from her leg to prepare her for a prosthetic - I am so fearful of the surgery leading to a long lasting infection as happened when she was first born and her hand was infected for months from the IV needle (and she is STILL healing from that).

I also read somewhere that there are only like 300 reported cases in the world - there must be more than that, but the city I live in, the last reported case was 10 years ago.

It's not like time is a luxury for me, so I am kind of undecided on whether I should spend time on a such a blog if no one really is affected by it so I thought I would ask here just to find out informally if other Goltz parents are even on the Web!

[2boyzmama]

i don't know anyone else with goltz, but i did google it quickly the last time you posted.

i'd say do the blog. first of all, it can be therapeutic. it can be your space to share your feelings. go back and get every email and forum post you wrote when you were pregnant and share that (if you're comfortable doing so). other women might be in your shoes, told their baby will have deformities and pressureed to abort. i'm guessing that one of the reasons that it's so rare is because many pregnancies are aborted once the limb deformities are discovered.

i have had several people contact me through my blog whose children have my son's syndrome. they do a google of either symptoms or diagnoses and my blog is listed. someone may find you that way as well.

and, as a bonus, you can easily share pictures of your beautiful daughter with friends/family who might not live close!

[lightheart]

Mom to a son with Goltz, I PMed you.

have you been in contact with the NFED? http://nfed.org/

[BookGoddess]

Originally Posted by spunk

When I was online looking for information on Goltz after learning that is what my daughter has, I barely found anything, and what I did find was mostly techy med stuff - I was thinking of starting a blog with my personally experiences with Goltz so any future parents looking for info won't feel as alone as I did -

That's really a wonderful idea! People rely on the internet so much these days for information that I can see how a blog such as yours would be a blessing to other families.