Hi there!!

[Michelle]

Hello..I am currently 7 months pregnant with my second son. We discovered about 10 weeks ago during ultra sound that our son has some form of spina bifida. It is an L4 L5/S1, they aren't completely sure, nor are they sure if it is a closed (skin covered) or open neural tube defect. Up until now the dr.s have not detected any Chiari II malformation. I've noticed that when I try to research this information on my own in journals and studies, the information is a too detached and clinical for me. It is really nice to read thorough some of the postings to realize that in the midst of all this unknown that others have experienced it too & now have joyful lives. I think these last 8 weeks will be the most difficult because initially the diagnosis was so much better than what I had come to expect based on internet research, but now all of the scary parts of surgery and post surgery are making me really nervous. I have a great medical team in place, just at this stage no one can give you any definites. I am glad I found this website.

[Barb]

Hi Michelle,

I am glad you found us too. The most important thing to remember is that your baby will be perfect in your eyes. I had a 'typical' child first as well and I am so glad that I did because C is always doing everything he can to be like his big brother.....from trying to play basketball to smart mouthing me. He is so much more 'typical' than not.

The one thing that will probably change more than anything for you will be all the time you spend going to appointments that first year. Try to get any therapies that you can to be in the home. You usually have to push for it but they will give it to you if they can. For me, that made a big difference in my sanity level that first year. He had therapy 4 times a week. If I had had to drive him and my two year old to all of those appointments I would have been exhausted.

Barb

[kali]

hi and welcome
you certainly are not alone, I didnt know my son had sb until after delivery, I dont know why they didnt tell me before? but in some ways I am glad I didnt know. but when I did learn it was a shock. but one look at my little boy, was all I needed, he was perfect to me. and as he started to grow, I was just as proud as any mother could be. when I think back to the operations, they were very emotional times, I remember holding my son before they took him away for his first and second operation, and whispering in his ears, dont worry mommy is here.
be strong it is worth it.
kali

[Michelle]

It is so nice to hear your experiences. I am just trying to not worry about things, I know whatever the outcome, it will be fine. The anticipation is the hardest part so far!

[kali]

if you need us we are here.
hugggssss kali