Living with Spina Bifida :: Charlotte’s Journey

I don’t share our journey with Spina Bifida because I want people to feel sorry for us. I share it to bring awareness. I share it in hope that other families who have children with special needs will see they are not alone.

May 29, 2009- that day will forever be engraved in my memory. We went in for our routine 18-week ultrasound and were excited to find out we were having a girl! Our excitement quickly turned to sorrow as the doctor sitting across from us told us all the things that were wrong. I didn’t understand what he was saying; I couldn’t hear anything through the shock of this news- we were the 1 in 1000 who would have a baby with spina bifida. Four hours later, I finally pulled myself together enough to walk home.  When my mother called, I began sobbing again, only able to say “it’s a girl,” before I handed the phone to my husband to deliver the rest of the news. I cried all weekend. Over the next few months, we met with every pediatric specialist who would be working with our daughter, had weekly ultrasounds, and began to prepare for our new reality.

October 9, 2009- it was time to meet our daughter. I felt unspoken emotion realizing within moments I would give birth to a child with special needs. After she was born, doctors immediately covered the opening on her back to protect the spine, and she was swept away to the NICU. She had her first surgery when she was 19 hours old, followed by another 3 days later.

We knew having a daughter with Spina Bifida was going to be hard. Life now revolves around making the best decisions for her care. She’s unable to go the bathroom herself, so we catheterize her every 4 hours and give her an enema every night. We’ve spent a lot of time in the hospital. I can’t event count the number of trips to the ER over the past four years. She has frequent appointments, x-rays, MRIs, and blood work. In her short life, Charlotte has had 15+ surgeries and procedures. When people ask us how she’s doing, our answer is always, “Today, she’s good. We have no idea how she’ll be tomorrow, but today, she’s good.”

Charlotte has lower leg weakness due to nerve damage and goes to physical therapy every week to strengthen her legs and to learn to walk with a walker. You might see her cruising around Target or the zoo with her bright yellow walker decorated with Disney Princess ribbons! She’s just like any other 4-year-old. She likes dancing, cuddling, The Lion King, and ‘love’ doesn’t even begin to describe her affection for Princesses.

After a 3-week stay in the Pediatric ICU and 7 surgeries earlier this year from extremely high brain pressures, Charlotte is now in stable condition. We are hopeful that she will have some relief for a few years. We know she will someday, sooner or later, be back in the hospital. Surgery is in her future. There is no cure for Charlotte’s shunt issue, but her neurosurgeon is involved with research to create a new shunt that would help those who suffer from the same problem.

We have been blessed with amazing support from family, friends, and The Spina Bifida Family Network. We’ve met families who know exactly what we’re going through. We’ve been able to ask questions, share concerns, and ask for physician recommendations. They’ve encouraged us and helped us out during some pretty dark days with snacks, meals, toys, books- and Charlotte’s favorite- a nerf gun to shoot whoever dared walk through the door of her room in ICU!

Click here to learn more about Spina Bifida.
If you’d like to donate towards the research that is being done by Charlotte’s neurosurgeon, you can find more information here.