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.

November 29, 2019 2

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.

October 19, 2019 0

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.

March 11, 2019 0