My name is Shirley and am 18 weeks pregnant. Last week I was informed that my son has spina bifida. When my husband and I heard this, we were devastated because we lost a baby last year to Potter's Syndrome (cysts in the kidneys that didn't function properly, thus failing to produce amniotic fluid and making it difficult for the baby to continue to grow). Needless to say, we were far from happy. The good news is that our little boy is pretty much healthy overall. They found a tiny hole at the tip of his tailbone and some fluid in his brain. My OB is going to monitor me closely. After speaking to genetic counselors, OBs, and doing our own internet research, we decided not to give up on him. Everyone says that I'm strong, and not to toot my own horn, but I've been through my share of trials and tribulations since I was 5 years old (I am now 28).

I am not, or rather, was not, very religious. For a while I've been feeling a tad "lost." Yesterday, my mother-in-law invited us to go with her to church. I must admit, I was very angry and didn't understand why God would do this to me again. I felt like He was picking on me, by making me go through soo many challenging things in my life. But I know deep down inside that's not the case.

My friends and husband call me the "research queen of the internet." I'm always able to find info for friends/family within a few minutes. Naturally, I want to understand what my baby has. It took a few days, but I came across your website today...first I saw your story in "Reach Out" Magazine, and then I went to your site.

THANK YOU. I will never fully understand what my son will go through but I'm glad to know that with God, family, and friends, we can get through this. Your story brought tears to my eyes. Tears of joy, that my little boy will have a wonderful life. I can always share your story with him within the years to come. I plan to be there for him in every which way.

Basically, I just want to say God Bless You and thank you. If you have any advice, I'd greatly appreciate it, so will little Nikolas. :-)

I was just blessed by reading about you. You are a real inspiration to me. I'm on the other end of the stick. My name is Erin. I'm 38, and just had my sixth child, a girl named Kelly, who was born with spina bifida. Ever since I found out about this when I was 18 weeks pregnant, I have felt God's peace, and have never been really upset. We love her so much, it is unbelievable, but now I am worried she will resent me when she gets older. Do you have any advice for how I can raise her so that she isn't resentful?

She does not have hydrocephalus either, thank the good Lord. Kelly's defect was at L4 or L5, they are not sure. Where was yours? What kind of crutches do you use? Why do you need them? Most people I see that can walk use braces but not crutches. Kelly is taking Ditropan for her bladder. Do you have bowel problems? What do you suggest for that? I never ask God why? I just thank God for giving her to me and making her so healthy. To look at her you would never know anything was wrong. She is perfect and beautiful in our eyes. You are beautiful also...I saw your picture.

Well, I have to go. My kids just got home from school. Please write back, I need someone to answer questions sometime. We are Christians also. He is our strength.