What is your story?!?
Hi, my name is Katie and I am 20 years old. I was born with a birth defect called Spina Bifida. Spina Bifida is now known to be caused by a folic acid deficiency during pregnancy. There are two main forms of Spina Bifida. One develops in the first four weeks of pregnancy and the other between seventeen and twenty-one weeks. Most doctors do test for this while the mother is pregnant however, my mother's test came back negative. Although, she tells me it would not have changed her mind on having me, she just would have been better prepared. The day my mom went into labor with me she also lost a good friend to complications of Spina Bifida whom was only twenty years old. He spent a lot of time at a children’s hospital in Chicago Illinois. My mom had a very normal and healthy pregnancy and never dreamed she would have nothing less than a healthy child. I was a natural childbirth with no pain medication or anything. My grandma was in the room when I was born by my mom’s side. I am told I was delivered and the doctor allowed my mom to hold me for a brief moment. Then they whisked me away to another room. Being a first-time mom she thought this was totally normal. Shortly, after doctors came in and told our family that I had a mole like tissue on my back and they suspected it was something more. They feared I had Spina Bifida.
They were informed that I would need to be taken to a hospital that specialized in children’s care. Due to my mom’s friends passing, at no fault of the hospitals, she choose to go to Riley Children’s Hospital in Indianapolis, Indiana. Three hours from our hometown. So at three days old I arrived at Riley. Doctors did many tests on me including an MRI. To perform the MRI, it was very important that I not move, so I had to be given oral sedation. My grandmother told me my mom was too scared to hold me and said, I was so limp, almost as if I was dead. So, until the doctors where ready to perform the MRI she held me. The testing confirmed I indeed had Spina Bifida. However, mine was on the unusual side. That little mole they saw was actually a lipoma or fatty skin mass that had grown over the hole in my spine. This was both unusual but a blessing. You see this lipoma had actually stopped spinal fluid from leaking and going to my brain. It also is the reason all the prior testing had came back negative. I spent 256 days my first year in the hospital at Riley. I had my first surgery at 3 months old. It took doctors fourteen hours. The lipoma had grown to the size of a grapefruit, it had in layman’s terms spider-like legs of fatty tissue that came off of it and had grown around the bottom four vertebras, my pelvis, kidneys, and bladder. My pelvis had to be cut and removed in spots and refused back into my body.
My mom and grandma never left my side. Taking turns going back and forth to the local Ronald McDonald House to get a little sleep or a bite to eat. After surgery, I had to be placed on a board and could only be held completely straight or it could paralyze me. My mom would wrap her arms around me while I laid in the crib, but only my grandmother would hold me because of this fear.
Doctors felt my Spina Bifida was so severe that I probably would never walk. Well, I proved them all wrong. I walked at nine months old with the help of my service dog. He had a harness that I would hold on to and use like a walker. I never crawled like a normal child though. Due to muscle atrophy I was only able to crawl backwards. When I was five years old I wanted to be in a school-related play. This required me to crawl forwards. This was the 1st time I was finally able to do so.
Shortly, after I had returned to Riley for another MRI this one was rather emotional for my mom. Instead of being sedated I could now lay still enough to not need it. The nurse called my name to go back for the procedure and I told my mom, “I was a big girl now” and I could go alone. Now, I fall asleep during them.
Over the years I have developed other health issues due to my Spina Bifida. I have a neurogenetic bowel and bladder and my kidneys didn’t start growing until I was about eight. At the age of nine, I developed chronic migraines. I now receive Botox injections in my head, temples, and neck every eight weeks to help with this issue. I also tried the Daith piercing for migraines and I didn’t really notice a difference until I had my last surgery in June of 2017 and had to take out my earrings. My freshman year of high school I developed an infection called Histoplasmosis. I ended up in the hospital for about a month. I had been coughing so badly that my rib cracked. It punctured my lung and it deflated on the left side. Now, I have only a half of a lung on that side. At 15 I was diagnosed with Fibromyalgia.
Due to health reasons I switched to being schooled online instead of a classroom setting. I was able to work extremely hard and catch up and graduate on time. I have also suffered from Chronic Sinusitis for a very long time as well as some other issues. I am currently on medical leave from college due to some health issues but dream of someday working with hearing impaired children and those with special needs.
I enjoy reading, music, and crafts. I love to snuggle with my emotional support pets Harley and Chewie. They are both Holland Lop Bunnies. As well as spoiling my dog Baxter and kitty Princess Pepper. I have recently started the hobby of swapping letters with pen-pals and other “spoonies” aka Chronic Ill people. I also have a love for LuLaRoe clothing. To date, I have had a total of 8 spine surgeries and a total of 19 surgeries in all. I am currently in physical therapy after cracking the rod that was placed in my spine last summer.
How has your story shaped who you are today?:
I know my story has made me who I am. Without it, I don't know what my life would be like. It has helped me become strong in ways others will never understand. It is the reason I want to teach children with special needs. It is why I want to give back to others. My story has made me who I am and will always be.
What encouraging words would you give to someone who shares a similar story?:
I would tell them that it's going to be hard at times, but you can't give up. You have to keep going because at the end of the day all you will remember is how strong you really are.