Snapshot of One Person with Spina Bifina: Courtney Parker

Spina bifida also known as split spine. A birth defect in which a developing baby’s spinal cord fails to develop properly. There are fewer than 200,000 cases per year. There are three types of Spina bifida occulta also known as hidden spina bifida, myelomeningocele and meningocele.

 

Occulta- Also known as hidden spina bifida. It is when a baby’s back bone doesn’t fully form in pregnancy. The baby is born with a small gap in the bones of the spine. Spina bifida occulta is common and happens in 1 in 10 people.

 

Meningocele- A birth defect in which a developing baby’s spinal cord fails to develop or close properly in the womb.

 

Myelomeningocele- This is the most severe causing paralysis, bowel and bladder difficulties.

 

Hydrocephalus- Water on the brain.

 

Shunt- A narrow piece of tubing that is inserted into the brain in the fluid filled ventricle. The tubing is then placed most commonly in the abdomen but can be placed in the heart or lungs.

 

Hello, my name is Courtney I was born in 1989, and I was immediately rushed to Riley hospital in Indianapolis due to a hole in my spine. I have Spina bifida myelomeningocele, the most severe type causing me to be in a wheelchair for the rest of my life. I have had multiple surgeries due to my disability: 4 back surgeries, bladder and bowel augmentations, 3 shunt replacements just to name a few. But I don’t let my challenges stop me from doing the things I like to do. My hobbies are hanging with my fiance Brian, playing with our son, art, writing, and listening to music.

 

I will say this:   Being a disabled parent to “Spider-Man” has many challenges. . The most challenging things are lifting, bathing, and dressing him. But there are many rewarding times in being his mommy,  such as his smile and him waiting  for me in the morning for snuggles and our play time. Yes there are many struggles,  but Brian is always by my side as a wonderful support. He has built a carrier that attaches to my electric wheelchair so on walks, in stores, at the park and many more places,  I can put him in the car seat and wheel him around that way.

 

 

 I also have anxiety and depression so some tasks are harder to handle than others. The biggest task that is hard for me would be large crowds. I have trouble with severe anxiety speaking in front of people so writing is an outlet for me to deal with my emotions. But in the last few years Brian has been working with me on getting over my fears.