Shelly

In October 15, 1992 two peculiar babies were delivered by an optional Cesarean Section. The first newborn to be removed from the womb was a boy weighing in at 8lbs. The attention was then directed to the small, feeble, petite girl who was subsequently born two minutes later, respectfully Shelly.


The little girl weighed only a meager 2lbs. The female infants low birth weight was directly associated with abstraction from the womb at the 35th week of gestation. An emergency C-section was performed because previous sonograms had revealed an absence of amniotic fluid around the smaller twin which was me. This condition characterized by the absence of amniotic fluid is referred to as Oligohydramnios. This condition is potentially fatal because it prohibits the fetus from receiving adequate nutrition during the stages of fetal development. In order to not completely destroy the chances of me living to take my first breathe, doctors felt it necessary for the pregnancy to endure as long as possible to ensure my lungs were developed enough to allow me to breathe. When a sonogram was performed at the 35th week which revealed that I was on the verge of respiratory distress and my fetal kidneys were beginning to shut down, my mom was abruptly told she was going to be delivering that very day, with no exceptions. The situation was so intense they didn’t even allow my mom to go home and pack her belongings for her stay in the hospital. About four hours later my mom was prepped for surgery and given a local anesthetic (epidural) and transported to an operating room. With my father at her side the Cesarean section was successfully executed and my brother and I were beginning a rather interesting journey.

My brother and I are fraternal twins and when I say Fraternal, this is an understatement. Two twins may be fraternal but, there are minor similarities which can be derived from the two. My brother and I look nothing alike. Describing our relation to one another based upon our appearance is like comparing a mouse to a giraffe; there is just no similarity between the two. My brother was born with Mahogany hair, green eyes and an athletic physique. I was born with dirty blond hair, blue eyes and an average body which is considered to be skinny by many. I guess the one similarity we had in common was our dreaded white skin and freckles. At the time presiding my birth one of the pediatric physicians noticed I had small jaws and the muscular structure of my face wasn’t exactly on par with the average newborn. This observation prompted a genetic workup which returned normal. My parents were relieved but, this feeling didn’t last long due to other problems which arose a few weeks later. I desperately needed to gain weight due to my extremely low birth weight but, I couldn’t because of my inability to position my lips around the bottle and suck the milk out. This dilemma prompted doctors to perform a percutaneous endoscopic gastrostromy tube insertion (G-tube). I had the operation on January 16th 1993; when I was only three months old. This surgery was just the beginning of multiple invasive operations and medical procedures to come.

After I had my G-tube operation there were various problems revolving around my Gastrotomy site or the site wherein the tube was placed. The surgical site was inflamed and an infection developed there after. In addition I also encountered some difficulty with the prospect of coming off the ventilator after the procedure. I was reintubated for another ten days until I partially recuperated. This was nothing compared to the burden which pardoned the G-tube. I was only four months old for the Gastrotomy;so of course I have no recollection of the events whatsoever. I also couldn’t take care of the G-tube myself; there for leaving my older siblings and parents to insure the care of the tube. At one time I was receiving thre feedings a day because of my inability to suck and my recurrent problem of Gastroesophageal reflux. Gradually I made progress. In part due to the Fundoplication the doctors performed which was an operation to tighten the esophagus to prohibit the reflux of stomach contents back up into the Oesophogus. After this surgery I was then able to eat small portions of food without puking it up but, my family was still required to feed me at night. My brothers and sisters referred to the tube as “the button”. My siblings would get a kick out of holding bottle racing competitions between my brother and I. My sister would usually be the bottle feeder and she would attempt to feed me with a bottle but, I was just to slow to keep up with my brother. This is when my sister would utilize my tube and feed me formula through the tube. Because we didn’t consider percutaneous injection of formula “cheating”; I was always victorious!

Besides the problems commonly associated with MS I also had a hodge-podge variety of problems which were aberrant in general due to my insufficient nutrition during gestation and also being delivered at the 35th week of gestation. To this day I still speculate the degree to which my nutrition or lack there of contributed to my development of MS. Further advances in neurobiology are on the horizon and it is my hope I may one day find the answer to this complex question. Anyhow, I had and currently have different atypical abnormalities not related to Mobius. These problems became apparent less than one year of age after I had my first MRI at the age of four months old to assess my feeding problems. The MRI scans revealed significant cervical medullary compression due to a hypoplasia of the foramen magnum. Looking back, I find it ironic doctors identified other medical problems while attempting to assess one individual problem. Events like this never seize to amaze me.

On February 26th, 1993 I had my second operation at the tender age of four months old. Surgeons performed a C1 laminectomy and removed the foramen magnum. The intubation was somewhat difficult because of my micrognathia. Surgeons identified the cervical fascia and made an incision in the midline, exposing the pericranium of the Occipital bone. The cervical soft tissues were elevated over the arch of C1. Upon observation of these appendages they concluded that the lamina of C1 was intact though still cartilaginous along the middle but, appeared to be significantly displaced along the side compared to the lamina of C2. Surgeons confirmed this was the problem causing the dura to cave in. After this crucial observation they removed the arch of C1 along the midline out to the lateral aspect of the Thecal sac(a protective membrane which wraps around the spine). This was performed successfully. I stayed in the hospital for five days and they sent me home when they concluded I was stable.

My parents were forced to face the music on July 13th when an MRI scan revealed the previous operation I received to correct my hydromyelia had been a failure and the cavity had remained virtually unchanged following my posterior fossa decompression. My neurosurgeon recommended I undergo another grueling, invasive surgery to correct the persisting problem for once and for all with a shunt. On September 15th 1993 at the age of eleven months old I underwent a lumbar laminectomy. While the operation was underway surgeons were horrified to discover my spinal cord was tethered due to a small fibrolipoma of the filum terminale. The surgeons were unable to insert a tube in the central canal at the region of the filum. Instead they made an incision in the caudal spinal cord and placed a Silastic wick into the hydromyelic cavity. The operation went as planned and finally after one year and two major surgery’s the problem which could potentially leave me paralyzed in the lower extremities was rectified. I was incubated for ten days there after and eventually released from UCSF in good condition.

Now that my neurological ailments had been rectified my parents realized that I was extraordinarily weak. I was one year old and I couldn’t sit up, walk or perform any complex motor movement. I also couldn’t drink formula frequently because I would just puke it up because of my apnea. My neurological problems were exacerbating my apnea so when the neurological problems were rectified I was finally capable of gaining weight, which in turn strengthened my muscles and allowed me to get stronger. From then on there were no setbacks and I eventually learned how to speak without ASL even though it wasn’t crystal clear. Unfortunatly I forgot all my hard learned ASL. I was even able to attend pre-school when I was five years old.

My brother and I attended a small private school from preschool through 8th grade while at least I did anyway (my brother left for 5, 7 and 8th grade). This was an excellent school to attend given my conditions. I was never teased or harassed and if I was it wasn’t to my face. There were times when my brother would over hear someone else talking crap and he would usually say something to vouch for me. I remember having a possy of friends during elementary school. When I look back on my time in elementary school it brings back warm memories. My time in junior high was even better than it was in elementary school. Except somewhere along the lines my posy of friends diminished. Even so I still remember having a few close friends. The only adversity I faced during middle school was when students started dating. It was at that time that I started to feel unwanted. No guy I knew liked me more than a friend and the more I realized I couldn’t have one the more I desired to have a boyfriend. As stupid as it souds I attended the 9th annual Mobius Syndrome convention in San Fransisco to look for a boyfriend. Well of course I didn’t get one but, I did get a pen-pal, who was a girl. After going to the Mobius Syndrome convention I decided I should bring the boyfriend iissue to a rest because it was creating unnecessary drama. Besides the boyfriend issue I was one happy camper in junior high. I won athletic awards for my upper body strength. I won academic awards for my writing and studious performance. I even wrote the commemoration speech given at my 8th grade graduation. I was going to deliver the speech myself but, chickened out at the last minute and extended the duty to someone else. None the less these were the years when I was very extraverted and willing to subject myself to uncomfortable situations High school was a different matter….

High school was hell!!!! I had been attending the same school for ten years and wasn’t ready to move on with my life in high school. I didn’t like the idea of being at another school. I am not good with transitioning therefore executing this massive change completely shattered my confidence. I was not happy whatsoever. People were nice to me but, bitches behind my back. I attended St. Vincent de Paul High School for three years and during this period in my life I acquired an excellent education. It was very high stress and didn’t configure well with my Attention Deficit Disorder. I had no friends whatsoever and I didn’t have any sport or hobby to make day to day life meaningful. After three years of utter hell I decided to make the hardest change of my entire life; changing schools. I transferred senor year from a small, private school with 400 students to a large public school with over 1600 kids after attending private schools my entire life. My world was literally turned upside down. I’m not gonna lie I was scared shitless. Fortunately the change has been forthcoming and I have met many fabulous people who are very excepting. I am finally starting to come out of my protective, introverted shell and make new friends. I now realize I have to be vigilant if I want to see changes happen in my life. I have to put out the effort to get a BF, I have to nurture the relationship; those aspects of life just don’t happen by themselves. If I desire clearer speech I should continue speech lessons where I left off. I am the indelible force to be reckoned with. I have learned in my eighteen years of life that I am capable of doing anything I set my mind to so complaining won’t rectify my dissatisfaction.  

My advice to anyone that possesses MS is to not let anyone crush your hopes and dreams in spite of your outward disposition. My parents always had faith in me and encouraged me to partake in any activity I desired and they constantly reinforced the philosophy I was no different than any other kid. Adults labeled me as a “special needs” child who wasn’t capable of performing on par with other children my age. Teachers urged my mother to place me in a special edd class just because of my abberant facial expression. She told them I was perfectly capable despite my deficits. Entire teams of doctors at UCSF urged my mother to sighn a consent form for surgeons to perform a Tracheotomy. My mother insisted I shouldn’t receive the Trach because it would inveitably be more of a hinder than a help to my situation. The point is; don’t let a doctor, teacher or any other person for that matter convey you can/can’t do (or not do) something just based on their perception of your abilities based upon your outward disposition.

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