Who are we?

We are  We're not doctors, nurses, or medical researchers. We're earn no money from this site. Our children have undergone fetal surgery (surgery before birth) for spina bifida.  Surgeons operated to close their open backs where their spines and tissues failed to close early in the pregnancy.  

We are moms and dads who have shared a common experience and realized a common same need - the need for early, accurate information regarding all treatment options for our unborn babies diagnosed with spina bifida. 


How were our children born twice?

To close the open part of the baby's tissues and protect the underlying spinal cord and structures, surgeons open the mother's womb, expose the baby's back and lesion (born once), and return the baby to the womb to finish developing before being born (the second time) via c-section.

Why consider fetal surgery?

Neither this web resource nor its developers can determine whether fetal surgery is right for you or your family.  However, early diagnosis allows doctors to discuss all treatment options (both prenatal and shortly after birth), with families.  Consider a resource shared by the Children's Hospital of Philadelphia (CHOP): Fetal Surgery Infographic: Know the Facts.  Fetal surgery may be right for you and your child.

Why does the Spina Bifida Fetal Surgery Community last?

Our friendships have endured far beyond the frightening pre-surgical screenings, births, NICU stays, and first years of our children's lives.  We now share their milestones, their successes, their challenges, and our challenges in a closed, safe community free from judgment.  For more information, click "Join the Community" in the navigation ribbon.


Expecting a baby? Considering fetal surgery?

If you are expecting a child, we'd like to be the first to say, "Congratulations! Your baby will be amazing."  If your little one has been diagnosed with spina bifida, we'd like to say the same thing.  Trust that your baby will, in fact, be amazing.  

We've all been in your shoes...those scary first days filled with more questions than answers. You can do this.  We all felt the same way. We'd like to offer you support.