In November 1986 I took my son Stephen into his pediatrician for his 18-month checkup. I was one of the lucky ones; my pediatrician stressed regular checkups, with heights and weights recorded on a growth chart. After the nurse measured Stephen on the exam table, she handed him back to me. She moved to the counter to record his measurement. A moment later, she was taking him from my arms and she proceeded to measure him again. After handing him back to me a second time, she moved to the counter where the growth chart was sitting. As she was writing information down on paper, I heard her comment… “There that's better". I was quite unsure of what just occurred, however I remembered this happening at previous appointments. When I looked at the marks on the paper where she had just measured and noticed that the second set was longer than the first. This was my wake up call.
Stephen, picture above, only ever crawled with his arms. We called it his Sweet Pea crawl!
I considered what I had just seen and remembered this had happened before at other visits. When the pediatrician came into the room, I told her what had happened and asked her to re-measure him. She did and the measurement she found was more than two inches shorter than what the nurse had written down. When his new measurement was plotted on the growth chart he didn't even reach the bottom line, the 3rd percentile. What a shock! The pediatrician called the nurse to return to the room and asked her why the measurements were so different. Her comment was "I just couldn't believe he wasn't growing".
My pediatrician immediately sent us off for 3 tests. An x-ray of the pituitary gland (not days they do an MRI), blood tests to include a study of the thyroid function and an x-ray of the hand to determine his bone age. We were pleased to find that the pituitary was fine with no growths and the blood tests were normal. His bone age was that of a 3-7 month old which was shocking yet good news meaning he had extra growing time. The next step was a referral to a pediatric endocrinologist.
While I state the previous paragraph with just facts… let me tell you what that day was like. I felt as if my world had just fallen apart. My perfect little boy was being sent for medical tests and the doctor was talking about brain tumors, blood tests, growth hormone, and more. I remember having to hold my feelings and thoughts in, as my son and daughter were at my side this whole time. I still recall walking down the hallway toward radiology in the hospital… the hall was empty, Stephen wanted to get down from my arms and walk. I set him down about the time 2 people in white coats rounded a corner. I still remember how these 2 medical professionals stared at my son and how they twisted their heads as he walked past… they were watching an 18 month old walking but to them, he looked he was no more than 6 months. This vision still lingers in my mind today… 30 years later.
Over the next 10 months, we visited the Endocrinologist as requested. Those were 10 of the worst months of my life. We were accused of child abuse, neglect, & malnutrition… thankfully our pediatrician was a friend and stood her ground against the endocrinologist or we most certainly would have been referred to children’s services. Stephen did not like the endocrinologist and I honestly feel the doctor did not like my son. Stephen fought so hard each time the endocrinologist tried to measure him that the doctor asked me to give him two doses of Chlorohydrate, a drug to induce sleep, before our last visit in September 1987. That was the last straw! To give my son unnecessary medications just to make life easier for the doctor, I think not. I had come to hate these visits and after that I refused to return. The endocrinologist had never tested Stephen for anything. All we did at each visit was measure him, talk about his diet, and leave not knowing any more than we had before. I found out later after requesting Stephen's records that the endocrinologist felt that he was genetically short stature and possibly constitutionally growth delayed, but I was never informed of this in the 10 months of visits.
About this time an option of transferring to San Diego was offered to our family. My husband had always wanted to live there, so we checked into it and decided to make the move. One major factor in my wanting to move was the opportunity of better medical care for our son. We moved in January 1988 and by February, I had an appointment for Stephen at UCSD. What a great feeling when the doctor walked into the room and immediately developed a friendship with Stephen. After an examination and reviewing all the previous records, the doctor told me that he too felt Stephen might be constitutionally growth delayed, but the only way to know for sure was to do a growth hormone stimulation test. He explained how the test was done and what the results would tell us, as well as explaining the options if the results showed growth hormone deficiency.
Pictured to the left is Stephen & Daniel in 1988, both are 3 years old (note the difference in their faces!)
At last some hope! I finally had a doctor who liked my son and who would talk to me. The test results seemed to take forever to come back from the lab, but when they did we had the answer to all the questions we had been asking for the last year. Stephen had "growth hormone deficiency" and could be treated.
As we look back over Stephen’s medical story from birth to diagnosis… things started falling into place. He was Intrauterine Growth Restricted (IUGR), he had severe jaundice in his first 2 weeks, he was diagnosed as Failure to Thrive (FTT) by the time he was 4 months, he slept a lot, and he was having bouts of hypoglycemia. Now it all became clear & we truly believe that these were all a result of being severely GHD. Stephen’s stim tests were all under 1.5, with the normal range being 10.
Stephen's treatment began on April 29, 1988, less than three months after his first visit to UCSD and one month before his third birthday. The nurse who came to our home to teach me how to give Stephen his injection was very patient and helpful, even though our first shot was a disaster! As soon as I stuck the needle into Stephen's leg he knocked it out with one swing of his arm. With a panicked look on my face, I looked at the nurse I asked, "What do I do now?" Stick it in again was her unwelcome response.
We have come a long way since that first shot. Stephen grew just short of 5 inches in his first year. The changes we experienced on a day to day basis were thrilling to us. The first time he was able to retrieve a cup off the countertop or turn on the light switch in his bedroom were milestones. Stephen was almost 4 before he no longer needed our feet to stand on to help him reach the toilet. At 4½ he finally was able to reach the pedals on his tricycle. By the time he reached 5th grade Stephen was no longer the shortest kid in his class and by high school you could not find him in the crowd. Stephen played high school and competitive soccer and was one of the fastest kids on the field. He never let his diagnosis define him. We calculated that Stephen received 4888 injections during this 13.5 years of treatment.
From a child who was never to reach 4 feet tall, to the normal stature of today, Stephen's growth disorder has changed my life. Because of his diagnosis, I was involved with founding MAGIC and today enjoy helping other families of children who are just beginning the growing years.
Stephen & Mark at the MAGIC Convention 2003,
both are 18 years old