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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Thursday, June 2, 2011

Prenatal / In Utero Surgery for Spina Bifida

Every few days I check to see how people have made it to our blog, and no fail, I always see at least one person searched for information on prenatal surgery for spina bifida and found our site that way.  Sometimes people are searching for information, sometimes for personal stories, sometimes to read statistics, and sometimes to see what other Christians are doing.  I know because it shows me exactly what they 'google' searched for.  If you are one of those people wondering, this post is for you. 

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....

  1. My first post summarizing the results of the MOM trial and our experience with it
  2. Ruth's Story of going through the surgery
  3. Andrew's Story of surgery, though he's yet to be born!
  4. A summary of what the surgery looks like
  5. The specifics on the study as published in the New England Journal of Medicine
  6. The MOMS study on the effectiveness of the surgery
  7. 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 jamie_lugo@hotmail.com.  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)

3 comments:

Gretchen said...

Great post Jami!!! I may very well have to steal it, because I believe SO MUCH in empowering futer SB parents!!

Your words are wonderful... I could never be that good :)

Jamie said...

You always write well, Gretchen, but you are also free to steal away :)

Jill said...

Great post!