Shriners Saved My Son’s Life ~ reprinted
EDITOR’S NOTE: This article sent out by the Chairman of the Board of Governors for Chicago’s Shriner’s Hospital is a touching story about the power of human relationship and connection in creating a space for healing. This story came to the ManKind Project Journal because the father in this story, Steven Twohig, and the friend that he mentions, Hal Klegman, are both members of the ManKind Project. Steven is part of the Central Plains Community, Iowa. Hal is a long-time member of the Chicago Community. Thank you Steven for sharing this touching story about your son. Thank you Hal for serving so long for such a noble cause!
GORDON J HUSK, CHAIRMAN, BOARD OF GOVERNORS, SHRINERS HOSPITAL®–CHICAGO
While at the Chicago hospital for a series of meetings, I had the opportunity to visit two of our operating rooms and a cast room. I observed two surgeries—one to release hamstrings for a boy with cerebral palsy and the other to build a palate for a cleft lip/palate patient. Our excellent surgeons expertly performed the procedures, and the results will be lifechanging.
While one might assume a cast room would have less dramatic action than an OR, this case was exceptional. The boy had a severe spinal curve and was about to receive his seventh cast. On display were x-rays of the spine at the time he had received each cast. The tiny boy was sedated; Dr. Kim Hammerberg adroitly positioned him to properly align the spine, applied a body shirt to cushion pressure areas, and began applying the cast. He constantly checked alignment as he completed the plaster-wrap cast, then covered the cast with fiberglass from the hips to the shoulders.
After I returned to my office, Public Relations Director Kally Walsh introduced me to Steven Twohig, who had brought his young son to the hospital for a cast. I asked Steven if his son’s name was Jeremiah, and he said yes. I told him Jeremiah was in good hands, and I had seen the cast being applied. During our long conversation, I asked if we might publish Jeremiah’s story in our magazine.
His immediate response was, “How could I say no? Shriners saved my son’s life. I will gladly do anything I can to help Shriners.” When Jeremiah was 10 months old, Steven and Val began to notice something unusual about his posture. At 11 months, they took him to a doctor who told them they were being paranoid and had nothing to worry about. The problem seemed to get worse, and when Jeremiah was 1 year old, they took him to a pediatrician who would not attempt a diagnosis due to the extreme spinal curvature. The doctor ordered xrays, which showed a 45º curvature, and the doctor again declined to give a diagnosis, but referred him to a specialist. Steven says, “Jeremiah was 13 months old when we saw the specialist for the first time. By then, his curvature had progressed to about 56º. The diagnosis was cryptic, at best. He would not give us any worst-case or even best scenario for our boy. He would only say it was bad, and he had a somber tone every time he talked to us.
It got to the point where I demanded he give us some idea as to what Jeremiah’s future looked like. He said casting was not an option, as his curvature was too far along to show any results. They fitted him with a brace with the ‘hopes’ that it would slow the progression until he turned 3, in which case he would need growth rods in his back and have repeated surgeries to have them lengthened. The belief was we would eventually have to fuse his spine. They did not really seem sure of what they were telling us. It was as if they were reading a case study from a book. We were also told the x-ray disclosed an abnormality and we needed to see a neurosurgeon.”
Steven also said, “The neurosurgeon suggested it was ‘just a tethered-cord spine,’ he would perform surgery, and Jeremiah would bounce right back. He said even if it was wrong, it was a simple surgery and we should do it ‘just in case.’ I look back in wonder at how I had hoped cutting into his back would work. By this time, we were terrified. Everyone we saw gave a diagnosis that went along with their specific specialty. Nobody could give us a straight answer. I remember being in tears when I would watch our son run around. I mentioned this to my friend Hal Klegman, who is a Shriner in the Chicago area. He gave me an application for treatment and suggested I contact Shriners Hospital®.
To say your response was swift would be an understatement. The truth is I almost felt as though you had been waiting the whole time. We were called and told that a private plane would be waiting to take us to our initial assessment. When I told our local specialist we were going to Shriners Hospital, his response was, ‘Some people call what they do cutting-edge; others call it … experimental.’ The response left me feeling I had stepped on his ego. It is strange to think back on that comment and see how out of touch he seemed with Jeremiah’s specific complications.” Jeremiah and his parents were picked up and flown to Chicago. Steven says, “Four hours after leaving our home, we had seen three doctors and multiple nurses. Your neurosurgeon said the abnormality in the x-ray was within standard deviation and he didn’t see any reason for surgery.
We were relieved, not because we were told our son didn’t need to be cut open, but because we could tell this was not the first case you had dealt with. There was a sense of purpose and certainty. Dr. Sturm came in with his nurse, Linda, and suggested casting was Jeremiah’s best option, even though the curvature had progressed to more than 60º. He suggested that the process was non-invasive and that although it wasn’t guaranteed to work, the expectation was high. Jeremiah is now being seen by Dr. Hammerberg, who has indicated Jeremiah may need two more casts, but he is very pleased with the results. So are we. The curvature is down to 18º when he is not in a cast.” Steven’s most recent e-mail states, “I can tell you that we have never really been verbally promised anything. No one has given us any guarantees that this procedure will work. We have only been given hopeful expectations. But the non-verbal guarantee we have always been given from every staff member at
Shriners Hospital is that our son will be treated and cared for with love. From the janitor to Gordon Husk, we have been treated as family members from our first interaction. It brings tears to my eyes to think of the support, generosity, care and understanding we have been given. I can’t think of any other place in the world I would prefer to take care of my son. You are truly a gift from God.”
Shriners Hospitals for Children® is a pediatric health care system of 22 hospitals dedicated to improving the lives of children by providing specialty care, innovative research and outstanding teaching programs. Children up to age 18 with orthopaedic conditions, burns, spinal cord injuries, and cleft lip and palate are eligible for care and receive all services in a family-centered environment, without financial obligation to patients or their families. Shriners Hospitals for Children relies on the generosity of donors to deliver this mission every day.
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