My Crooked Story

Disclaimer: The following story includes triggers such as hospital anxiety, malpractice, and acts of violence. This story is intended to inform and not discriminate against hospital staff. Just a family passed down story of my childhood that I think is a bit too ridiculous not to share.

Born With A Disability

Fun fact about myself, I was born with a birth defect called Spina Bifida. In English terms, this literally means split spin. This usually means that during development the spinal cord of the baby had not properly developed and has either grown in an abnormal position or hasn't fully closed. There are three levels of severity of Spina Bifida. Spina Bifida Occulta (least severe), Meningocele (moderately severe), and Myelomeningocele (most severe). I was luckily born with Spina Bifida Occulta. This level usually means there is no obvious signs other than the occasional small tuff of hair growing in the area in which the spinal cord is split. Other than that, there is no sign of knowing a child has it unless they have had test such as x-rays on their backs. Without going into much details here is a link where this birth defect is explained more in details.

Spina Bifida Association: What is Spina Bifida

The Sign

Now my first couple months of life were not so easy. Along with having a birth defect, that at the time my mother didn't know about, I was also born with severe Asthma and eventually also caught pneumonia at 3 months old. Yeah...not the best start. But I am a fighter and eventually pulled through even when the doctors weren't sure if I was going to make it.

Fast forward 4 years, my mom started seeing something strange in my behavior. From what my mother describes as, penguin walking, my balance was very off for a long time as a toddler. I would often complain of leg pains and soreness. Now my mother has had 3 kids before me so her mother instinct were on point at this time. She instantly knew something was wrong. Taking me to the doctor's there often told her that it was nothing to worry about. That it was just growing pains and will eventually go away on their own. She tried to follow what they said and would give me some pain medicine when it got really bad.

One day, I was at daycare and playing like normal little 4 year old girls do. With my dinosaurs and Barbie's and making them get married and all that jazz when a little boy came up to me and asked if he could play with me. Now, being the hyperactive toddler that I was out right refused and asked him to go away. Seems like the boy didn't like my response and proceeded to mess with me. As I was sitting outside in the sandbox, the boy pretended to go somewhere else and play soccer. He teased me over and over until he got my attention by kicking the soccer ball to my back in order to get my attention. This caused me so much pain that my mom had to come in to pick me up from daycare. As usual, mom gave me pain medicine but this time it didn't go away like it usually did. In fact, it spread down into my legs. I ended up going to the emergency room and once again, my mom had to ask the doctors why I was having so much reaction to pain in my back and legs.

By this point I had changed pediatricians about 3 times because my mom hated that the doctors always dismissed her concerns. This pediatrician was concerned that I might have a bruised spin since I was kicked square in the middle of my back so he ordered an x-ray to make sure nothing was wrong. Lo and behold, there was something very seriously wrong with my spine but not in the way anyone thought.

Diagnosis

Having a very serious look on his face, the Doctor immediately told my mom that I had to have surgery as soon as I possibly could. This was crucial to my survival. Ask any parent who cares about their kids that at this type of news, they would be as freaked out as my mom was that day.

On the x-rays, there was a mass building in the lower part of my spin. This mass was an apple sized sack that contained a large amount of spinal fluid. This sack was tucked in between my lower rib cage and my large intestine. They noticed that I had more than one spinal cord. Now this is to say, your typical human being has one long cord running from the base of your neck all the way down the base of your spine. Your spinal cord is the nerve that transfers blood, vitamins, and spinal fluid from one half of your body to the other. Around three fourths of the way down, my spinal cord had and extra tendon that split off from the main cord. At the end of this separate cord was the sack that seemed to have been growing since I was born. Slowly, my spinal fluid was going of course and ending up at this sack like destination and not down towards my legs like they were supposed to. This was the cause of my "growing pains." Without the proper amount of fluids running from my brain and into my legs, my legs were weak and often lacked the nutrition they needed to function properly. On top of that, because the fluids weren't flowing properly, there was this strange occurrence that the fluid would just be stuck there which cause a sort of overflow that sometimes made the fluid run backwards and into my brain. With so much fluid pressure, I would often have migraines and headaches. Granted all these problems were caused by one little separate cord. I was then diagnosed, after extensive research, with Spina Bifida Occulta.

Now, because this defect wasn't detected before, the sack was getting too big for my little body to handle. It was predicted that it would rupture and cause a clot in spin that could cause me to loose feeling in my limbs. Surgery was the only option to prevent this. Queue the dramatic music.

Surgery #1

Having open spinal surgery on a 4 year old girl seemed like a very risky and scary thing to process. My mom was overrun with worry and anxiety. This surgery had about a 70/30 chance of succeeding. This was because of how far the sack had grown and where it was placed. Since my spinal cord was mostly intact, there was not much risk of damaging it because it wasn't the cord they were dealing with. However, removing the sac from the position it was in needed delicate work. There was also the possibility that my brain was retaining a lot of fluid and if it wasn't drained properly through this first surgery, there was a high chance of me getting a second surgery in my brain. How fun.

So skip to 8 hours later of open back surgery, doctor's finally came out of the operating room at inform my parents that my surgery was a success and all they had left was to stitch me back up. Unfortunately for them, there was a slight problem that came up.

Surgery #2

This is where things get interesting. Apparently, after the stitching of my back, the nurses were making a count of all the tools that were being used in order to take them to get sanitized as a post-surgical procedure. Well not all the tools were accounted for. There was a pair of surgical scissors missing. Guess where they ended up finding it?

If you guessed inside my body. Then you'd be correct.

Somehow, during the middle of my surgery, some nurse or doctor that was attending me left the surgical scissors inside my tiny body and stitched me up totally forgetting it. After finding that out, there was another nurse who had made a report of all the procedures being done also found another shocking news about the scissors. These set of tools was actually taken from a set that was cleaned off but not sanitized. These pair of surgical tools was used on a patient that was HIV positive, a few hours before they were used on me.

Legally obligated to tell the truth, the attending nurse went out and told my parents of what they had discovered and my mom absolutely flipped! In her words:

"I was so shocked and so angry that I was ready to fight anyone who was near me. I slapped that nurse clear across the face, tackled her, and went bat shit crazy, until your dad pulled me off. He had to slap some sense into me before I got arrested by the hospital police. I didn't regret it though."

After the show in the waiting room, the director of the hospital came to meet my parents and explained that they were going to make things right. 3 more hours into surgery again, where they had to unstitch the stitches, find the scissors, take out the scissors, and stitch me back up. I was then put in the recovery wing where everyone had to wait until I woke up to see if my cognitive reactions were normal.

Looking back on my memories, I remember waking up to my mom beside me. I could hear her holding back her tears as she asked me how I was feeling. To be completely honest I could barely see a thing. It was all hazy. I remember trying to get up from my position as I was laying on my stomach. All I could manage to move were my fingers. My mom told me that it was ok and not force it because the anesthesia was still in effect. I told my mom that I was going to sleep more and closed my eyes. It was a long time before I woke up.

Conclusion

Luckily, I had a happy ending after all this craziness. I was tested to see if I had contracted HIV from the contaminated scissors and I came up negative. I spent the next 3 months in the hospital laying on my stomach as the muscles in my back were recovering. Once the skin was healed enough, I spent another couple months laying on my back in bed since I was too weak to be walking on my own. My recover was tough and I developed a lot of problems after. Common problems after surgery with kids with Spina Bifida were things like bladder control, muscle weakness, restricted activity such as lifting and running, and tons of other side effects. While I spent a long time n physical therapy in order to get my strength back, I always have bits and pieces of my little happy moments in the hospital ward were I stayed. Some things like talking with other kids, going on wagon rides around the hospital (since I couldn't walk, the nurses would put me in a wagon that was heavily patted so that I could ride around and see everything outside my room), and my daycare class coming to see me while I was away.

Being born with Spina Bifida has its challenged that still affect me even today as an adult. There is no absolute cure to this birth defect and I will always have it. One thing I am proud of is that I am still here and living. It was predicted that I was going to be bedridden after my teen years. That if I didn't take care of myself, I wasn't going to make it past my 20's. But I had a wonderful and protective mom to be there for me and take care of me. I am now 23 and giving a big middle finger to those who doubted that I'd make it this far.

I painfully know that there are many more kids who were born with more sever versions of my birth defect. I was very lucky not to end up in a wheel chair or totally paralyzed. This defect is rare so I've only ever met 3 people in my entire life with this defect. All different people with different stages. I've researched about my defect and am always happy to inform those who are curious about it. Granted, I don't tell this story much since it is a bit scary. But I'm proud that I am a survivor of my horrible experience. Plus this story has been told to a whole lot of people by my mom. She loves to brag about how strong and brave I am. I just find this absolutely hilarious and the rightful cause of my anxiety with doctors and hospitals.

P.S

For those of you who are thinking "Why didn't we sue this hospital?" My parents actually wanted to sue the heck out of this hospital after I was able to walk on my own since it took up all their time. Unfortunately, the hospital where I had my surgery had a massive fire and was shut down due to the damages it took. With no place to sue, there wasn't much my parents could do since it was the hospital organization they were trying to take to court for malpractice.