I had an inquiry as to my profile picture and the absolutely ADORABLE little girl in it (OK, so maybe I'm a little biased!) - Yes, she is my daughter and no she doesn't have EB - praise Jesus!
The picture itself is 4 generations of Gorman women - my grandmother (84), my mom (age unknown - haha!), me (34), and MacKenzie (2).
Our decision to have a baby was not one that we entered into lightly. We wanted to get our DNA test done before we got pregnant, but, the insurance company wouldn't pay for any of that test and it was very expensive. We did not have the funds to get the test done. We did see a genetic counselor who told us everything that we already knew.
Dr. - your family suffers from a dominant form of this disease which mean that each child you have has a 50% chance of having the disease.
me - yes, I know that - however, I do not have the disease the way the rest of my family has.
Dr. - you should have a DNA test done to find out what kind you have.
me - yes, I know that - however, we don't have that kind of money.
Dr. - good luck with whatever you decide - please come back and see me if you get pregnant
me - great - how much did THAT just cost!!
Basically, Shaun (husband) and I sat down and had a very frank discussion that was based on God and God's will. I said, lets just get off the birth control and if we get pregnant then that was God's will and if the baby is healthy then that is God's gift to us, and if the baby isn't healthy then God must have big plans for our baby.
So, we just left it all up to Him. We had a fairly large team of prayer warriors during the pregnancy too!
After I got pregnant the insurance company paid 100% of the DNA test where I found out that I have the recessive dystrophic form and that my mother is a carrier (my father HAS dominant dystrophic).
If you have EB and are thinking of having a baby, I suggest that you see a genetics Dr. and then get the DNA test and then if your faith allows - put it in God's hands.
On another note - although I am still broken out and fairly uncomfortable, my energy is back today and I have actually gotten some laundry done! whoo hooo!!
Thanks for your comments! Keep em coming!
Janel
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3 comments:
I was curious, how did pregancy affect your EB? I've heard it can affect you internally as well, so was that an issue for you when giving birth? And did your increasing belly create problems with the skin on your stomach?
Marie
Yes, I did break out really bad! I did not have any internal issues, but I had issues with the hormone changes and the "stretching" of my skin. My back was the first and then "the girls" and then the sides of my stomach, lower stomach, insides of my legs and the my feet - as I got bigger I broke out more.
MacK was 3 weeks early by c-section because I was not getting any bigger and she was completely out of room!
My whole hormonal structure has changed from having a baby and I still break out more than I used to.
I have enjoyed reading your blog!
Thank you for sharing your life with us.
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