October is Spina Bifida awareness month! An estimated 166,000 Americans are living with Spina Bifida today. As many as 90% of people born with the most debilitating form of Spina Bifida will also have hydrocephalus, or fluid on the brain. Thanks to advances in medical treatment, most people with spina bifida can expect to live a normal life. You can visit the Spina Bifida Association’s website at http://www.spinabifidaassociation.org to find out more.

Today Signposts welcomes guest Christie Rainwater, sharing about her son Luke, and their experience with Spina Bifida. A big thanks for sharing your story with us, Christie!

I remember the day we found out we were having our third child as if it were yesterday.  My husband, as well as our two older children, Noah and Emma, (8 and 6 at the time) were so excited.  We made our first appointment at the doctor and she confirmed our pregnancy and our due date.  She provided lots of pamphlets on tests for blood work that would help determine any issues from the beginning but I declined them all.  My husband would have preferred I took them at the time but knowing that we had two healthy children why would I expect anything less?!

At 19 wks we went to the ultrasound with kids in tow to experience this very exciting day.  We arrived early and eager to get the process started. As we looked at the baby on the ultrasound (a boy) we all thought everything looked perfect! Hands, fingers, feet, legs all seemed to be in order. The tech stepped out of the room to allow time for the doctor to read the results and then would let us know if all was good.  As they walked back into the room (the Ultrasound Technician, the Doctor and the Genetics Counselor) we immediately knew something was wrong.

The doctor sat beside me and, as gently as she could, showed us on the ultrasound why they believed our baby boy would be born with Spina Bifida Myelomeningocele and Hydrocephalus.

We were in complete shock! We had no idea what either of those two things were and couldn’t understand — why did our third child have this, but not our others? 

Questions began to arise in my mind. Did I do something wrong to cause this? Did I not eat right? As the room began to fill with tears we began to ask questions to understand what this really meant. The doctor presented us with options for abortion and adoption if we didn’t want to keep the baby, but neither option was ever discussed. God provided us with a baby boy — no matter what conditions or struggles he or we would face, we knew he would be a blessing.

As the months went by, ultrasound after ultrasound the technician could never pinpoint the exact location of the opening. We began to hope and pray that God would heal our little guy and work a miracle. Our prayer was that not our will would be done, but His instead. In addition, we asked God to provide direction, strength, wisdom and understanding for us. For God to show us the path he has planned for us and to provide us a mission for his word to be spread.

Our life verse began to reveal itself to us…Proverbs 3: 5-6 Trust in the Lord always and lean not to your own understanding.  In all your ways acknowledge him and he will direct your path.

The day Luke was born was a glorious rejoicing! He was a full term, 8lbs, 8ozs baby boy, and he did have both Spina Bifida Myelomeningocele and Hydrocephalus, but he was healthy in all other aspects.

This month we’ll be celebrating Luke’s second birthday. Our precious son is army crawling, sitting, and using the potty and he loves to play ball with his brother and sister. He is babbling out new sounds every day and will give you a high five and a fist bump! He recently had surgery for a Chiari malformation and it transformed Luke into a creative, interactive, smiling, laughing (occasionally frustrated) little boy.

I look back over the last two years and can clearly see that Luke was meant for us! We didn’t have a mission, a true God given mission, until Luke. Our mission is to bring awareness, share the gospel and provide hope for families dealing with Spina Bifida.

Luke has undergone numerous surgeries, procedures and appointments since his birth, but the joy that he brings to us, his extended family, friends, church members, therapist, doctors, nurses, neighbors and those we cross paths with is all worth it. He gives the best smile and hugs to all those he likes and even those he dislikes! We are forever thankful that God thought enough of us to give us Noah, Emma and Luke. Each with their own unique personalities and abilities.

As we look to a future that we cannot predict we have learned to take it minute by minute, hour by hour and day by day.  We will continue to spread awareness of Spina Bifida and are already looking at our 2nd Spina Bifida Awareness Day in October of 2012.  In addition, we are also recording our story for the Carolina Healthcare Systems to be shown at their leadership training in November. We are thankful for the opportunities that have been given to us to share our story and hope that we can inspire others to take a stand for Spina Bifida.


 Thank you for sharing your story with us, Christie!

Click here to find out more about Christie’s Spina Bifida Awareness Day. Christie welcomes opportunities to speak at Women’s Retreats, Socials and Dinners, and you can contact her at ccrainwater@carolina.rr.com // 1 (704) 601-6892. Click here to find her on Facebook.