Although one is born with a tarsal coalition, as mentioned above, the symptoms do not occur until the bone has ossified / solidified to a degree. Often, the symptoms ‘turn on’ suddenly one day and don’t stop. These can include pain which may be quite severe and debilitating, lack of endurance for activity, fatigue, muscle spasms and cramps, an inability to rotate the foot and needing to walk in a contorted position to allow continued ambulation.
The above is a succinct snapshot of Justin’s experience with bi-lateral tarsal bone coalitition. So many of you have asked about the story of Justin’s feet, he rarely spoke about his years of surgery. He would limp sometimes, had many painful scars on his feet, hips, and his shin, but few knew the extent of his surgeries. Many saw Justin as “not cool”, he bore the brunt of much teasing, much name calling. Few knew the depth of his courage and his strength of his heart, his sheer discipline, the constant pain he lived with everyday. I still want to rip people’s heads off for their ignorance and stupidity, Justin was a much better person than I shall ever be, for he was quick to forgive. I could see the hurt in his eyes, like shadows passing, I would watch his eyes lift to a crucifix and resolution would fall over his face. Such a quiet gentle faith, a faith that humbled me regularly and still does. I miss his presence, he was an extraordinary soul and it is very dark without his light.
Justin left for the Franciscan University of Steubenville late August of 2002, he was only 17 and starting his freshman year. He had, what we thought, nagging karate injuries, we did the rest, ice, PT routine, but nothing helped. He went off to college and it became evident that all the walking on campus was taking its toll on his feet and ankles. When he was home for Christmas we took him to see a different doctor, doc took one look at his ankles and said you need to see this guy at Union Memorial. We could not get all the testing done before break was over, so we arranged an MRI for January. Justin was intent on walking in the March for Life in DC on January 22, 2003. He came down with a group from Franciscan and then we met up with them and took him home for a very rushed 24 hours of tests at Union Memorial. Dr. Senatore looked at Justin’s MRI’s and said you need to see this guy, here, at Union. We had to take Justin back to FUS in pain and wait until March 17th, spring break, to see Dr. Guyton, a foot and ankle specialist. He was kind and gentle, told us that Justin would need extensive surgeries, bone grafts, plates, and screws in both his feet. He had bi-lateral bone coalitions, birth defects that don’t present until the teenage years. There really weren’t any options, by now the deformities were painfully obvious, both ankles swelling and leg muscles cramping with any activity. We took Justin back to FUS and scheduled surgery for May 9, 2003, two days after the end of spring semester. He was limping and in pain, it was hard to watch him suffer, but he wanted to be at Franciscan. He had made wonderful friends and loved being on campus.
Justin had his right foot operated on first. Dr. Guyton took hip bone to rebuild the outside of his foot, opened the inside of the foot to remove up to 1/2 of the diseased joint and then cut the Achilles tendon in four different places. Put in a plate and screws to hold it all together. The doc told us that while surgery stops the disease progression, Justin would never have a normal foot or ankle. Justin was such a trooper, he said that it wasn’t his eyes, or his hearing, or his hands, it was his feet and he would deal.
We had no idea how painful this surgery was going to be, it was a learning curve for all of us. Justin had a morphine pump at the site of his bone donation from his hip. He chose to donate his own instead of cadaver bone, using your own bone practically guarantees no rejection. I shake my head in confusion now, it just seems so odd, eight years later, Justin would be dead. Doug stayed by Justin’s side all night long. The nurses never minded having Doug around, he can be nearly invisible. He wouldn’t have left Justin’s side even if they had fussed at him, but the staff was very kind. I remember Justin saying to me that the pain of surgery was all worth it, it gave he and his dad precious time together. The surgeon warned us against bumping the ankle and foot until the graft had knitted together, told us not to let Justin fall or slip. Justin became quite adept at using crutches. I remember being so worried that blood was seeping through the huge bandage that went from his toes to his knee and at the hip site, then we learned that bones bleed, no worries. The boy never complained.
We spent that entire summer going to PT two to three times a week. The surgeon was reservedly pleased, almost too much motion had been restored to the foot and was creating instability and pain. Arthritis was a given, we were told that there would be increasing arthritis in both feet and ankles, they didn’t know how fast it would progress, or how intense it would be, just that it would be a factor in his life. Because of the severity of pain in his left foot, it was decided that he would be unable to return to Franciscan in the Fall of 2003, but would schedule the left foot to be operated on in November. Such a turn of events. I remember scheduling a family portrait for early November, I didn’t want something to happen to him during the second surgery and not have a family picture, funny how the mind works.
I look at the calendars, how busy we were, how packed each day was, full teaching schedule at St. Peter’s, we were homeschooling Ryan and taking him to the local community college for classes, it nags at me that we were too busy. Justin volunteered as a catechist aide on Monday nights, so we would go off to St. Peter’s every Monday night, I think he was still in the surgical walking boot. I forget what grade I was teaching, but he enjoyed hanging with the church ladies, they were a fun bunch. I was teaching an Apologetics class on Wednesday nights, and Justin would come out with me then too, there was a great group of young adults that year and it was treasured time before his next surgery.
Thanksgiving was right around the corner and so was Justin’s surgery, scheduled for November 21, 2003. He had applied to and had be re-admitted to Franciscan. I don’t guess I will ever understand why he had to go through all the steps again, he was out a year for surgery, but he was all scheduled to go back Fall of 2004. The surgeon said that by then he would be in good shape to walk the campus, or so we thought.
The continuing story here.
