A Hydrocephalus Thanksgiving

As I’ve mentioned before in earlier blog posts, besides being born with spina bifida, I was also born with hydrocephalus. This is a condition that causes cerebrospinal fluid to build up on the brain. To drain this fluid, a shunt often has to be placed in a person’s head. This shunt allows the excess fluid to run down from the brain into the peritoneal cavity (abdomen). I had my first shunt implanted within hours of my birth.

Throughout my life I have been very fortunate to have had little trouble with my shunt. This is not the case for many with hydrocephalus. Shunts can often get infected, or simply break down. Only once has mine needed to be fully replaced. This occurred when I was four-years old.

It was close to Thanksgiving in 1981 when I began to experience some of the worst headaches I had ever had to that point in my life. Along with the headaches, I became very nauseated. These are two very common side effects one can experience when a shunt begins to fail. So, when I began having these headaches and vomiting, my parents took me to Children’s Memorial Hospital in Chicago.

As we arrived at the hospital my neurologist, Dr. David McLone, did an exam of my eyes and confirmed my shunt would need to be replaced. He knew this, as he could see papilledema. This is a swelling of the optic nerves caused by excess pressure on the brain. Papilledema is yet another sign that there is a problem with a person’s shunt.

Therefore, I was scheduled to have surgery the next day. I don’t know what was more upsetting, the fact that I would need to have surgery, or that I would have to be in the hospital for Thanksgiving. However, what the doctors and nurses didn’t know is that I would not be deterred from having Thanksgiving dinner.

If my memory serves me correctly, I had surgery the morning before Thanksgiving. I then spent the rest of that day in intensive care, where I slept for quite a while.

I then woke up on Thanksgiving morning and was famished. However, I was told that I would only be allowed ice chips. If I was able to tolerate these, I would be allowed to have clear liquids. Not being one to give up easily, I downed the ice chips that I was given. Then, it was on to the clear liquids. I knocked those back as quickly as I could and told the nurses I wanted Thanksgiving dinner! They resisted my pleas at first. However, they consulted my doctor, as I was insistent that I wanted some turkey!

It pays to be persistent. My doctor saw that I had tolerated everything else that I had been fed. Therefore, he thought it wouldn’t hurt to at least let me try some solid foods.

I was given some turkey and scarfed it down almost as quickly as it was placed in front of me. Then I asked for some more, plus some potatoes and stuffing. Nothing was going to stop me from having Thanksgiving dinner. I ate until I was satisfied, much to the astonishment of the nurses. They should have never doubted a Bradshaw with an appetite.

Sometimes doctors do know what they are talking about, and their advice should be followed accordingly. I am glad that most of the ones I have had along the way have taken the time to listen to me. I know my body the best, as I have lived inside of it for 42 years now. Don’t ever let someone with an M.D. behind their name pressure you in to anything that does not feel right. Listen to your body. It will often tell you the right course of action. Sometimes, you just have to eat the turkey and forget about standard operating procedures.

2 + 2 = 4…or is it 5?

According to spinabifida.org “more than 10 million people worldwide have spina bifida.” Of those 10 million individuals, “approximately 90%” also have a disorder known as hydrocephalus. This disorder results in a disruption “in the flow of cerebrospinal fluid (CSF) through the pathways of the ventricles of the brain.” This abnormal flow of CSF “causes pressure on the brain.” Cerebral spinal fluid is a “clear, saltwater-like liquid that surrounds the brain.” Its job is to provide protection and hydration for the brain. Another function of CSF is to transport waste “away from brain cells.” Cerebrospinal fluid also supplies the brain with “important chemicals and nutrients.” Every “day the brain produces about 500mL of cerebrospinal fluid.” This fluid makes “a continuous circuit through the brain cavities (ventricles), and over the surface of the brain and spinal cord until it is absorbed by the body.” For those with hydrocephalus CSF is “constantly being produced” as normal, “but it cannot get out” to travel its regular circuit. Therefore, “it accumulates and causes raised pressure inside the brain.” This build up of pressure causes the ventricles to become enlarged, which in turn causes brain tissue to stretch and compress (spinabifida.org). Without proper treatment, babies born with hydrocephalus will die very soon after birth.

Within two hours of my birth, I was rushed by ambulance from Community General Hospital in Sterling, Illinois to Children’s Memorial Hospital in Chicago. It was here that Dr. David McLone implanted what is called a VP shunt. The VP stands for ventriculoperitoneal. Basically, what this means is that, I have a shunt that runs from the ventricles in my brain down into my abdomen or peritoneal cavity. This shunt drains the excess cerebrospinal fluid from my brain so that pressure is not allowed to build.

Learning disabilities are quite common for those born with hydrocephalus. Unfortunately, I am one of the many for whom this is true. For instance, throughout most of my schooling I had a very difficult time understanding math, especially algebra. This caused a lot of frustration while I was in high school. Understanding abstract concepts has always been a struggle for me. I can remember being in high school and feeling as if I would never make it through all of the various math classes that I had to take in order to graduate. However, with the help of several very good and patient teachers, such as Ruth Day and Cathy McCallister, I was able to complete my required coursework. I graduated from high school in 1995 and then it was on to college.

I started my college career at Sauk Valley Community College in Dixon, Illinois. Before starting at Sauk I had to take a placement test. To my horror, I was placed in remedial math. This meant that I would have to work my way up through several math classes in order to graduate. Starting out in remedial math classes was almost enough to make me want to through in the towel. However, I persisted and slogged my way up the ranks. In hindsight, I feel as if these classes helped me to review concepts that I had forgotten since high school. I also spent a lot of time in the Learning Assistance Center, receiving tutoring and extra help with my math classes. I give a lot of credit to Kay Turk and Jerry McNair for helping me pass these classes. They provided me with special attention, which enabled me to receive my Associate’s Degree in Communication Arts. However, this took me three years due to all of the time spent making my way through all of the math courses that I had to take.

After graduating from Sauk Valley Community College in the summer of 1998, I was on to Trinity Christian College in Palos Heights, Illinois. To my relief, once I enrolled at Trinity I realized that I would not have to take any more math! This is because I transferred in with my Associate’s Degree in Communication Arts. I cannot tell you how happy this made me. Maybe getting my four-year degree was something that was actually attainable after all.

I then completed two years at Trinity, where I received my Bachelor of Arts in Communications. I followed this up in 2012 with a Master’s Degree in School Counseling from St. Xavier University. Math is still my enemy. Ask me to do long division and I will just roll my eyes. Algebra is just a distant memory. I could not even begin to tell you how to do trigonometry or calculus. However, I am pretty good with geometry. I think this is because I can visualize angles, circumferences, and areas.

In conclusion, I’d write a 50-page research before I would ever attempt to do physics. Words are fun to me. I like to express myself through the written word. Equations are pointless to me. However, essays are something that I could write endlessly. I know 4+4 = 8 and that 5 x 2 = 10. Addition and multiplication are easy, but please, for the love of God don’t ever ask me to do long division ever again!

Diagram of VP shunt (https://www.ausmed.com/cpd/articles/hydrocephalus-and-shunts)

The House Call

This device was both friend and foe for many years.

Growing up I received some of the best medical care that was available for people who were born with spina bifida. I was fortunate to live just a couple of hours west of Chicago, which was home to Children’s Memorial Hospital. If you have read some of my earlier posts, you might recall my fondness for this place. Despite the pain that I experienced in that building, there were also lots of memorable moments.

Many of the memories connected to Children’s Memorial involve the doctors that I was blessed to have had there. First, there was Luciano Dias, who was a kind and gentle man. He had a passion for what he did and that showed in the way he treated his patients. He performed many of the orthopedic surgeries that enabled me to walk. Everytime I went to see him for my yearly check-ups he always showed great concern for me not only as a patient, but as a person.

Another wonderful doctor that I had gave my parents some great advice after I was born. He told them simply to “take me home and love me just as they would any other child.” This doctor’s name was David McLone. He was my neurologist for several years. Dr. McLone was a man with a great deal of compassion. His advice to my parents was some of the best that they would receive during a time of great uncertainty and fear. When I was born in 1977, not much was known about spina bifida. I am sure my parents were scared and unsure of what was in store for them. However, by the grace of God, they had some of the greatest doctors on whom they could rely for encouragement.

Besides Dr. Dias and Dr. McLone, there was also Dr. William Kaplan. He was another doctor who looked at me not as just another patient. He truly cared about working to improve my quality of life. Dr. Kaplan went above and beyond to ensure that I received the best treatment that I could.

As I noted in my last post, one of the most common problems that people who were born with spina bifida have is bowel and bladder incontinence. There are various procedures that I have had to help with these issues. Dr. Kaplan, who was my urologist while I was growing up, performed a few of these operations.

For instance, in 1986, he implanted a device called an artificial urinary sphincter. This device had a tiny pump that was inserted into my scrotum. From this pump there was a line that ran to a valve that was placed around the neck of my bladder. This allowed me to have control of my bladder. Every time I needed to urinate, I’d simply squeeze the pump a few times, which then released the valve at the neck of my bladder. The only problem with this device is that if you pumped it too hard it would lock the valve around the bladder. This was something I’d learn the hard way.

One summer day shortly after having the artificial urinary sphincter implanted, I was in the bathroom at home using the toilet when I put too much pressure on the pump and it locked up. What was I to do? I had to pee and my bladder was locked up tighter than the Hoover Dam!

Not knowing what else to do, my mom called Children’s and they suggested that we come right away to Chicago. As you might recall from earlier in this story, we lived two hours west of Chicago, and I had to pee! Therefore, we got in the car and made our way into the city. Dr. Kaplan was informed what had happened and he asked my parents to drive me straight to his house. Here we were making a house call in reverse. Fortunately, after two hours of torturous travel on a full bladder we arrived at Dr. Kaplan’s house.

He then instructed me to lay down in the foyer of his home where he proceeded to perform a miracle, at least in my eyes. He was able to get the pump of the artificial sphincter to release the valve that was holding back the floodgates. I then proceeded to relieve myself right there on the floor in Dr. Kaplan’s foyer.

This was a moment of great joy, as I finally had found relief. However, I was not sure about what had just happened either. Dr. Kaplan took it all in stride. He acted like it was just another day at the office. I am pretty sure his wife was not pleased about me using the entryway of their home as a toilet, but she was gracious. I also now had a story to tell.

Life is never dull when you have a body that operates in ways unlike most “normal” ones do. However, not many people can say they have urinated on the floor in the homes of one of their doctors. I am proud to say that I am perhaps one of the few.

Roger That!

In a few previous posts I have written about my time at Children’s Memorial Hospital in Chicago, Illinois.  It perhaps is a place that I could write dozens of stories about, as there were all kinds of people that I met there as a young boy.  I was exposed to individuals from various ethnicities, religions, and family backgrounds.  Children’s was a place that taught me that we are all people and that we should treat each other with respect.  It also was a place that showed me just how funny life can be. 

As I’ve noted before I was often at Children’s for extended periods of time.  During these stays I had the opportunity to experience things that other children my age would never experience.  For instance, there were times when naval recruits from Great Lakes Naval Station, which is just north of Chicago, would come by and visit patients.  I remember one time a particular recruit came to visit me.  He was a pretty good artist and he made a drawing for me.  This is a picture that I still have stored away somewhere.

When these young sailors would come by for a visit it would make me feel very special because they gave me their full attention.  I felt like I was important to them.  These feelings are something that I will never forget. 

I also had some interesting roommates along the way during my stays at Children’s.  One that often comes to mind when I think of those days is a little girl by the name of Courtney.  She rarely had family come to see her, which always made me feel sorry for her, as it can be terrifying to be in the hospital all alone.  This is especially true for a young child. 

It was around Easter one year when Courtney and I were roommates, and to help her feel better, my mother and father went out and bought her an Easter bonnet and a small purse.  These are two things that I am sure she had never had before.  When she saw them her eyes lit up as if they were the greatest things she had ever seen.  I can remember Courtney calling her parents and telling them about the gifts she had received.  It was heartbreaking to learn that just a few weeks later her brother had gotten jealous of the gifts she had received and proceeded to fill her purse with dirt.  I would like to know what became of Courtney along with some of the other people that I met while I was in the hospital.         

Despite the pain I was often in when I was in the hospital, the nurses and doctors always seemed to make things better.  I think this was because they knew how to treat children who were suffering.  Plus there always seemed to be plenty of things to do to keep one’s mind off of the pain.  For instance, you could make your way up to the ninth floor where there were a few arcade games to play.  Or, there were often magic shows put on by a local magician by the name of Danny Orleans.

Growing up I was a huge fan of Matchbox and Hot Wheels toy cars, and the gift shop at Children’s was always a treasure trove for these.  I can remember several times when I was hospitalized that my parents and I would go to the gift shop where I was allowed to pick out one or two Matchbox cars.  I still have many of these stored away.  They will always bring back great memories.     

Then of course there was the tutor who you went to if you were in the hospital for an extended period.  She was kind of a crotchety old lady who would look over her wire-rimmed glasses at you as she spoke.  You would think having to do school work while hospitalized would have been torture.  The tutor that I had while at Children’s made it all worthwhile though.  I am sure she had been a teacher in the Chicago Public School System since around the time that Al Capone ruled the city.  However, despite her gruff exterior she was actually charming in her own special way.  I think she had a good heart and truly cared for the children with whom she was working.  I just wish her memory had been a little sharper, because she never could get my name correct.  For some reason she always called me Roger, which to this day is one of the nicknames that my family uses for me.  I never really had the heart to correct her.  This woman, I am certain, has long since passed, but the memory of her will live on every time someone calls me Roger.       

Children’s Memorial Hospital in Chicago, Illinois shortly before it was demolished. Just inside those doors on the left were two stone elephant sculptures. I wish I could have gotten one of those before they tore this place down.

A Mother’s Perspective

For today’s post I asked my mother to contribute a story in which she gives her perspective on raising a child with spina bifida. What follows is her story.

“Behold, children are a heritage from the Lord,
The fruit of the womb is a reward.” (Psalm 127:3 NKJ)

On March 13,1977 the Lord blessed my husband Tom and me with our third son, Ryan Thomas Bradshaw.  Little did we know on thenight that he was born that our family’s life would be changed forever.  Ryan’s birth and the years that have followedhave taken us on an amazing but sometimes perplexing journey.  Through it all we have been there for eachother with God as our guide.

A week or so before Ryan was born I told my mother that I just felt that something was wrong with the baby I was carrying.  Her response was, “Oh, you’re just tired of being pregnant.”  That was true, but I still felt uneasy.  Because my second son had been born so quickly they told me when I went into labor with this third child I should not waste any time getting to the hospital.  So, when labor started early in the morning on March 13 we took our 4 and 5 year old sons to their aunt and uncle’s and headed to the hospital. 

I labored all day and around 5:00 PM the doctor told me we should consider a Cesarean Section as the baby was beginning to show signs of stress on the monitors.  Almost immediately my labor became very intense and the baby started crowning.  Forceps were used during delivery and as Ryan came through the birth canal, however, the myelomeningocele that had developed on his back ruptured during the delivery.  So, Ryan and my husband were rushed 130 miles away by ambulance to Children’s Memorial Hospital in Chicago.  So, my feeling that there was something wrong with my baby was true. 

We had so much to learn over the next few months regarding what was in store for Ryan and our family.  Because Ryan has already written about his birth defect I will not. As I mentioned at the beginning of this piece, life in this family has been an adventure.  The growing up years were not always pleasant for my boys but a good sense of humor helped in many situations.  You may wonder how our family stayed intact with two other boys to care for, jobs and a home to maintain.   

I believe there are three things that contributed to maintaining a “healthy” family unit.  First, and foremost, knowing that God is in control no matter what happens.  The Lord has answered many prayers on Ryan’s behalf and for the rest of us.   Then, we had strong support from extended family and friends that made all the traveling and overnight hospital trips possible.  Last but not least, as has been said many times; love conquers all. 

Me in one of my first pairs of leg braces.

Providence

My life is but a weaving between my God and me. 
I cannot choose the colors 
He weaveth steadily 
Oft' times He weaveth sorrow;
And I in foolish pride
Forget He sees the upper
And I the underside.
Not 'til the loom is silent 
And the shuttles cease to fly 
Will God unroll the canvas 
And reveal the reason why.  - Corrie Ten Boom 

I believe in the providence of God because of one place.  That place was Children’s Memorial Hospital in Chicago, Illinois.  On March 13, 1977 I was born with spina bifida and hydrocephalus, two conditions that would lead me to spend several weeks at a time at Children’s when I was a young boy.  I was born in a small town called Sterling, Illinois, which is just a couple hours west of Chicago.  Soon after my birth I was rushed by ambulance to Children’s Memorial.  From this point, into my early teens, Children’s was often my home away from home. 

I learned a lot about life during my stays at Children’s  I began to see life from a different perspective.  From an early age I saw how joyous life can be.  I also caught glimpses of just how tragic it can be as well.  For instance, I met a boy there during one of my stays whose mother had set him on fire.  This boy’s name was David.  He and I became friends while we both were staying at Children’s.

David was there getting treatment for his burns.  I was there being treated for a case of osteomyelitis, which is an infection of the bone.  David used to push me around the floor of the hospital where we both were staying.  He and I would talk about the things kids our age typically talk about.  However, there were also serious conversations.  It was through one of these more serious talks that I learned just how difficult David’s home life was for him.  His mother was a drug addict, who set him on fire one night when she was in a drug-fueled rage. 

Despite his circumstances, David was a very empathetic person, who seemed very kind to others.  He certainly treated me well and we enjoyed spending time strolling the halls of “three-west.”  This was one of the best floors to be on if you were staying at Children’s because the nurses were so much fun.  One such nurse was named Augie.  She was a very kind and loving woman. 

One afternoon I was given permission by one of my doctors to leave the hospital for a few hours.  Augie, my mother and I, then went to the Lincoln Park Zoo, which was several blocks away from Children’s.  It was an afternoon that I will never forget.  I had been in the hospital for several weeks, and it was such a joyful experience to get out into the fresh air and soak in the sights and sounds of the zoo.  Plus, it was fun spending time with Augie, as she loved to laugh.  It was an afternoon where I was allowed to forget about things and just relax. 

Many of the doctors and nurses at Children’s were so kind.  They were people who truly knew how to care for children.  I had the privilege of meeting individuals from all walks of life while I was at Children’s.  My orthopedic doctor, Luciano Dias, was from Brazil and was fluent in both English and Portuguese.  My urologist was a short, Jewish man named William Kaplan.  I can say he is the first doctor that invited me in to his house only to have me urinate in the entryway.  However, that is a story for another time.   

My favorite doctor of all was my neurologist, Dr. David McLone.  He was such a kind and gentle man.  He was one of the first doctors to treat me when I arrived at Children’s shortly after my birth.  Dr. McLone was the one who told my parents to take me home and love and treat me as they would any other child.  I believe it was this advice that has led me to not look at myself as someone who has a disability. 

You might ask what does all of this have to do with the providence of God.  When I was born in 1977, not much was known about spina bifida and hydrocephalus.  However, all three of the doctors that I mentioned above were physicians who were on the forefront in the treatment of spina bifida at this time. 

For instance, Dr. Dias was a pioneer in some of the surgical procedures that have allowed me to walk.  In fact, the picture of me that appears on the very first post of this blog is from a medical journal that details information about a procedure that Dr. Dias performed on me that straightened my legs, enabling me to walk. 

As noted above, I was born in a small town, which was just a two-hour drive from Children’s Memorial Hospital.  In 1977, Children’s was one of the leading centers in spina bifida research.  I was cared for by some of the leading doctors in the treatment of spina bifida.  I also had parents who sacrificed their time, finances, and energy to insure that I received the best care possible.  For the first year of my life, my parents drove me to and from Chicago each week.  There is no way this all happened by just a stroke of luck.  Children’s Memorial Hospital is no longer there on Fullerton Avenue in Chicago.  However, it will always be a part of me.  Likewise, it will always be a reminder of the providence of God. 

Bob Avellini and me in the cafeteria of Children’s Memorial Hospital. Bob was a quarterback for the Chicago Bears from 1975-1984. One of the perks of being at a children’s hospital is that professional athletes and other celebrities would often stop by for a visit. If only this could have been Walter Payton! Oh well, I look pretty good in that hospital gown and that IV sticking in my arm.

                                 

Put the Crippled Kid up Front…

Thanks for joining me!

“Always laugh when you can. It is cheap medicine.” — Lord Byron

Me at 6 years old looking quite dapper for my debut in a medical journal. The eyes were blacked out to provide anonymity. However, the leisure suit was screaming “I’m loud and I am proud!”

Writing a blog is an idea that I have had for quite some time. However, I have always hesitated because I was not sure anyone would be interested in anything that I have to say. Then, it occurred to me that writing is something that can be very therapeutic. If people enjoy what I have to say then that is just a bonus.

Since I was in high school I have always enjoyed writing. Being a life-long introvert, writing gave me a way to express myself. It also helped me to unlock some of the thoughts I had kept bottled up inside of me for many years.

When I was born my parents were told to take me home and love me and to treat me as they would any other child. The problem with that is I was not like any other child. I was born with a birth defect called spina bifida, which would require frequent trips to Children’s Memorial Hospital in Chicago.

Children’s was like a home away from home for much of my adolescence. Despite what you might think, I have fond memories of Children’s. The nurses and doctors there provided a level of care that was second to none. This was also a place, where as a young boy, I began to see the absurdity in life.

Self-deprecating humor got me through many days and nights in the hospital. If I was not able to laugh at situations it would just lead to frustration. Having a disability is frustrating!

Living in a world that was not made for someone like me forces one to overcome. Thank goodness for my stubborness and for my sense of humor. They are two assets that I have used in my life to climb over obstacles.

This leads me to why I chose “Put the Crippled Kid up Front” as the name for this blog. This comes from an incident when my family and I were at a local restaurant. The wait for a table was quite long, so my mom whispered, “put the crippled kid up front.” I then walked to where the owner of the restaurant could see me. He took one look at me and we had a table.

Since this time “put the crippled kid up front” has become an inside joke for my family. It is a way that I have used humor to overcome obstacles. It has also led to some surprises along the way.

In this blog I will share some of those surprises and will explore how living life with a disability can be both challenging and rewarding. I hope you will stick around and see where life has taken me.