Believing for Ben

For the first time since Ben had pediatric neurosurgery at the ages of four and five, he has been back in the hospital for what his father calls a life-altering operation.

Many of my readers have followed Ben’s progress from the time he was diagnosed as a three-year-old with a vascular abnormality in his brain, through three brain surgeries that ultimately saved his life, through his childhood years, and now to his time in high school. 

A little history

I began this blog in 2014 to chronicle Ben’s medical journey. He does not remember anything at all about his health problems as a young child. When he was only 3, he was diagnosed with an arteriovenous fistula (a vascular abnormality) in his brain. It was a life-threatening condition, and he had two brain surgeries at the age of 4 and another surgery the following year, all done by the world-renowned New York doctor, Dr. Alex Berenstein, who developed the procedure for repairing AV fistulas in children.

Ben was declared cured and has grown into a fine young man who excels academically, has played sports since he was five years old, plays percussion in his high school’s marching band, and volunteers in his community.

(Those early posts that explain Ben’s medical condition in more detail can be found by accessing the drop-down menu in the archives at the bottom of this post.)

Fast forward to today

However, Ben faced another operation two weeks ago, this time to lengthen one leg that has not kept pace with the other leg as he has grown. The fistula had been on the left side of his brain, and as he grew, his right leg did not grow as fast as his left leg, leaving it two inches shorter. All of his life he has walked and played sports with a limp that has become more pronounced as he has grown and also has affected his spine.

The surgery was at the same hospital in Atlanta that originally diagnosed Ben when he was only three years old. The surgeon had to break Ben’s right femur because it had a greater curve in it than was normal. A telescopic rod was then inserted into the femur that allows for the lengthening of the bone 1 mm/day for 50 days. Ben will have to be relatively immobile for some time and on crutches (or some sort of assisted walking device) for 4-6 months, and the rod will remain in place for a year.

Ben’s recovery from the surgery itself has been nothing short of amazing. (His first words as he was recovering were that he wanted a chocolate croissant. LOL) His parents had been told that he could be hospitalized for as long as three weeks while he underwent intensive physical therapy at the hospital.

However, he was released to go home within two days and arrived home all smiles and in good spirits.

He now must use a walker and may graduate to crutches but will need some sort of walking assistance for quite a while. Physical therapy is three times a week at a local medical facility. He is in the homebound program at school, and at this time I don’t know when he will be returning to school.

The rod in Ben’s leg is a new device, just approved by the U.S. Food and Drug Administration. Manufactured in Germany, it was personally flown to the U.S. by a representative from the manufacturer who was present in the hospital during Ben’s surgery.

An external controller delivers signals/pulses to the rod which then expands. The controller is held against Ben’s hip, and he listens on a stethoscope to make sure he can hear the whirring of the rod inside his leg. Someone also can listen at his knee, which I was able to do.

Here his mom is delivering the pulses to the leg…

A follow-up doctor’s appointment showed that Ben’s leg has already lengthened by nine millimeters.

Please continue to remember Ben and send more healing thoughts and prayers his way.

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life.

#BenStrong #Soli Deo Gloria #Baruch atah Adonai

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine