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June 2003

Marshall Syndrome
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Stephen Michael Raines was born on August 23, 1965 to David and Carol Raines (the story teller) in Dallas Texas. He was our first born child and I was only 19 years old at the time. I was young and a first time mother but I knew something was wrong from the very beginning. I guess you could call it a "mother's instinct." Stephen had breathing problems in the hospital and since it had been a difficult birth causing me to have some problems as well, we remained in the hospital for 5 days. Once we were home, I tried to do the very best that I could to care for him. Not knowing what his problems were at the time, I did not understand why he could not take more than 2 ounces of formula at a time and then be hungry again in 2 hours. This continued for several months. I knew that this was not normal because other babies that I was around were eating 2-3 times that amount at the same age. When I asked the doctor what was wrong with him, he told me "nothing, the problem is with youthe motheryou are just over anxious". This statement was something that I had to work through 32 years later when our granddaughter, Ashlyn was born. I had buried this deep down and carried the guilt sub-consciously all of those years. When she was born it opened the flood gates and I was forced to deal with it.but that is another story.

Stephen grew and was a happy baby and healthy in many ways. He never met a stranger (true to this day) and was loved by all who came in contact with him. He had an infectious smile and big brown eyes. The only problem I had with him was he really did not like to sleep a lot! David was in the military when Stephen was born and soon left for Viet Nam. I am sure that this did not help Stephen feel secure. We lived with my parents while David was gone. Because David was in the military, Stephen was seen by many doctors at many locations. He was seen by doctors at Lackland AFB in San Antonio, Carswell AFB in Fort Worth, Naval Hospital at El Toro in California and the Naval Hospital in Charleston, SC. I have said he was seen literally from coast to coast by many doctors and not one of them diagnosed him with a sub-mucus cleft palate (remember the nursing problem?) or knew what any of his other problems were. The main health problems he had as an infant and toddler was repeated ear infections. I took him to the doctor every time and he was put on antibiotics each time only to have another infection in 6-8 weeks. This went on for months and these repeated infections resulted in nerve damage and significant hearing loss. At Charleston Naval Hospital, he was tested (very large head for his age) and diagnosed with hydrocephalus (water on the brain) only to be told later that it was a "mistaken diagnosis". We say that it was a "miracle healing".

In April 1969, David left the military and we moved back to Dallas to live and find work. Stephen started staying at a day care when he was about 3 ½. From there he went to kindergarten and later started first grade in the Dallas Independent School District. Stephen was a challenge to his teachers in school. One problem was his speech; it was hard for almost everyone to understand what he said. As his mother, I could understand him better than anyone else but sometimes he even stumped me. His speech problem was a result of a "backward bite", his lower teeth protruded past his upper teeth. As a result, he was put into speech therapy. Unbeknownst to me, this was a turning point in all of our lives.
One evening I got a telephone call at home from his speech therapist. She had been to a seminar conducted by Kenneth Salyer, MD. He talked about his work with patients with sub-mucus cleft palates. He explained to them what to look for and encouraged them to refer anyone that they thought might be so afflicted to him for evaluation. She was convinced that this was Stephen's problem and she was right! That began our long journey to correct some of his problems with the help of Dr. Salyer and a whole team of doctors. At the time, Dr. Salyer was teaching at Southwestern Medical School in Dallas and he used Stephen as a case study (even though at the time none of us knew it was Marshall Syndrome).

Stephen's nose contained no cartilage, only soft tissue. He had his first surgery at the age of 10. It was a major surgery lasting over 8 hours. Bone was removed from his ribs and placed in his nose to form a bridge. This turned out to be very helpful when he started wearing glasses shortly thereafter. He had another surgery at 13, one at 16, and another at
around 19 and the last one in his early 20's. These were his "major surgeries". He had other minor ones. He also had an embedded tooth removed. He wore braces for about 7 years to correct his bite and straighten his teeth. He had them removed just before he became a senior in high school in time for his pictures that would appear in the year book. He also continued speech therapy through his senior year in high school.

Dr. Salyer referred Stephen for an IQ test when he first started treating him. I am not sure what he was looking to find but the results were that his IQ at the time was 137, just below genius level. Stephen had challenges in school but made good grades. His main problem was staying focused. I am sure that he was bored and not challenged enough. Schools do not always deal well with "special children" and especially back then. He graduated high school in 1983 and later earned a college degree. His intelligence has never been a problem.

Stephen did not share with us with problems he had at school regarding his birth defect. I am sure that he felt "different" a lot of the times. He always managed to have friends and I think he was happy. He had lots of support from both his dad and I and home was his "safe haven". All of his family loved him and to us he was "very special" and still is. I cannot imagine him being any different. Stephen has said that dealing with "Marshall Syndrome" has taught him not to focus on a "problem" but to look for and focus on finding a "solution". He has turned into a remarkable adult and I am proud to call him "son".

P.S. We had never heard of "Marshall Syndrome" until 1997 when Stephen's daughter, Ashlyn was born (mom is Kay). She had a full cleft palate when she was born and she too did not have cartilage in her nose. Of course, medical science has progressed so far and once again Dr. Salyer played an important role in our lives. He referred Ashlyn to Dr. Day, a geneticist who diagnosed Marshall. It also gave us answers to other problems that Stephen had dealt with which included his vision (cataracts) and joints, etc. If Ashlyn had not been born with Marshall, we may have never had some of the answers that we now have (I wish there had been an easier way to find out). Her surgeries are different since they can now create bone in a petri dish instead of having to take it from her ribs. They also inject the bone with a hormone that allows the bone to grow as she grows which will mean fewer surgeries for her (YEA!!). Stephen and Kay had a son, Aaron in October of 2002. He is the spitting image of Stephen and favors big sister, Ashlyn. He will soon have his palate repaired and begin his battle with Marshall Syndrome. We do not question as to why God allowed Stephen, Ashlyn and Aaron to have this disease because we know that they are his children and are very special to all of us. Our prayer is for answers to this disease so that it will not be passed on to another generation but can be stopped!

Carol Raines
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