There is no right or wrong answer about what you should do. The best thing you can do is be well informed, pray, and follow your heart. No one can tell you what the right decision is for you, your child, and your family. There are advantages and disadvantages to the surgery, as with everything in life. Here are some links that you may find helpful if you are searching....
- My first post summarizing the results of the MOM trial and our experience with it
- Ruth's Story of going through the surgery
- Andrew's Story of surgery, though he's yet to be born!
- A summary of what the surgery looks like
- The specifics on the study as published in the New England Journal of Medicine
- The MOMS study on the effectiveness of the surgery
- A great summary of what the surgery does and who is eligible
If you are reading this, I am sure you are confused and scared. You don't have to feel bad for that, we all go through it, and I felt that way too. If I knew back when we first found out what I know now, though, it would have saved me many tears and much heartache. I would not have stressed, cried, worried, or questioned anything, because I would have known everything would be ok. More than ok. Everything would be perfect. Your child will be a blessing no matter what you choose. We walk a different journey but I believe ours is even more amazing, because we are lucky enough to see life through different lenses. Lenses that see more hustle and bustle, more doctors, and more therapists, but also deeper joy, greater triumphs, and astounding determination.
If you are worried, scared, or feel alone, you can always e-mail me to talk. My e-mail address is firstname.lastname@example.org. If you need someone to listen, someone to share their story, someone to pray for you, or someone you can ask questions, I am here! Another great resource is www.spinabifidaconnection.com. On that site you will find parents and kids new to spina bifida, those who are more 'seasoned', and many adults living and thriving with spina bifida. Just know that you are not alone.
Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you. (Deuteronomy 31:6)