It was a happy day when I found out I was pregnant. This was our first child. The pregnancy was good, no problems at all. When it came time to deliver my baby was upside down and backwards. Back then it was more common to deliver instead of Cesarian Section. I will admit it was somewhat of a painful delivery but when I saw my son, and he was fine, I did not remember all the pain.
His name is Deno. He was a complete joy in our life. He was a good eater and followed the normal path of growth (I thought!). Needless to say he was not being plotted on a growth chart so any growth failure was not recognized. I became pregnant again, when Deno was 15 months old. Again we were happy and hoping for another healthy child. A week before Deno's 2nd birthday our daughter, Dianne, was born. Again we were lucky to have a healthy baby and I was very happy to have a daughter and a son.
All was going well until Dianne began to stand up. For some reason Deno looked so small. I was also getting hand-me-downs from younger cousins and the clothes were still very big for Deno. Questioning the doctor the answer was always "He will grow in his own time". Little did I know at that time what a normal growth pattern was. Dianne continued to grow and was catching up to Deno. Again questioning the doctor I got the same answers. When Dianne was the same height as Deno I knew there had to be a problem but still no concern on the part of the doctor.
When Deno was just over 5 years old and Dianne over 3, Dianne stood 3.5 inches taller than Deno. At a regular visit to the doctor I lost it! I was angry for I knew there was a problem and insisted something was wrong. This was when I was referred to a pediatric endocrinologist to determine if there was a problem. Unfortunately, many years ago, the system and medical knowledge on growth disorders was not what it is today. They began some tests and found he was thyroid deficient so he was put on thyroid medication for 6 months. He did grow slightly but not enough to determine his growth failure was from a thyroid deficiency. This was when they discussed testing for Growth Hormone Deficiency (GHD). I had never heard the word growth hormone before so I had many questions. For those much younger than me (which is most of you!) there was no internet back then, no basic articles on GHD (other than in medical libraries and so medically inclined I did not understand one word). I felt so lost and alone. I cried many nights not knowing what was wrong with him. All I wanted was to understand what was going on, what this GHD was all about and a prayer to have someone to talk to going through the same situation.
The stimulation test for GHD was complete. I waited for a call but instead received a letter in the mail about 4 weeks later that told me my son was GHD and would never reach 4 feet tall with the limited amount of growth hormone he was producing. I was in shock. I cried for hours. They told me his disorder was called Hypopituitary dwarfism. How could this be? Why were they labeling him with "dwarfism" when he was of normal proportions? He did not have the proportions seen on dwarfs so I was totally confused. They recommended I return to discuss possible treatment of growth hormone. Of course I returned to see what I could do to help him grow.
Upon my return to the pediatric endocrinologist they told me I should consider growth hormone treatment. Not realizing what this actually was I agreed to do whatever I could to help him grow. Then they told me the growth hormone comes from cadavers and was given with injections. I was crying again for there was no way I could stick a needle in my kid for what they said would be 3 times a week. But I would figure something out for I knew I had to do something. I was also explained that there was a limited supply of growth hormone but being he was a severe case he would qualify. Luckily I had two nurses as neighbors and I figured I would talk them into doing the injections for me.
All of this changed me as a person more than you can ever know. Not only was I raising two children but now I had to try to educate myself about my son's disorder, fight for his growth, and be as strong as I could to help him grow. But I still did not plan on giving injections! That was the part I hated the most.
We got the call that the growth hormone was in. Before that I asked friends that had access to medical libraries to get me some information on GHD. You would be surprised what little was available back then and I could barely understand all the medical terminology. Still feeling like I was in the dark we returned to get the growth hormone and be trained on giving the injections. I watched what I had to do but would not attempt the injection when asked. I told them I knew what I was doing and can handle it. But my plan was to get my neighbors to help me. And for those so new to GHD the injections were not as they are today. They were like one inch needles into the muscle. Not sub-q as they are today. So home I went with growth hormone in hand and to call the neighbors! But that did not go how I planned it.
My neighbors were good friends. So good that they realized I had to learn to do this on my own. They said they would watch me but I had to do it myself. I told them to forget it and I can handle this alone so off they went. Luckily Deno was a real trooper. I explained to him all about his disorder (at least what I understood at that point). Then I proceeded to mix the vials and prepare him for the injection. I was so scared. I was actually shaking. I asked my husband to do it and his response was not what I expected. He said dads go to work and make the money and moms stay home and give the injections! I guess I should mention at this point that he never even changed a diaper!! I was as ready as I could be, took Deno's arm and all I could remember was them telling me to jab quickly. I jabbed so fast that the needle went in and right out. Deno responded by saying "See mom that wasn't so bad". He did not realize I did not even give the injection. I put the syringe down, went into the bathroom, and cried. I did not want him to see me so scared. After that I explained to him that I did not give it right and we had to do it again. To make a much longer story shorter, I finally did it. After the worst three months of my life we went back to the pediatric endocrinologist to have him measured. I was shocked, happy as could be, when told he had grown 1.5 inches. This was the most growth we had seen in years! Now here was the mom that could never stick a needle in her kid.......well now I could not wait to keep giving these injections.
BUT...........upon return to the pediatric endocrinologist I was informed, due to a shortage of growth hormone, that they did not have more drug for us. Come back in 3 months and hopefully there would be more. This was so disappointing! Happy to finally see growth to now knowing he would not grow as well for the next 3 months. This happened several times over the years so no doubt some growth was lost. He was so close, after many years of treatment, to reaching 5 feet tall when the bad news came. He was well into puberty and they were discontinuing his growth hormone treatment for his bones would fuse soon. Again I was confused for I did not realize how puberty played into his condition. Now understanding that there is no growth left at the conclusion of puberty he would be 4'11" as an adult. Why, I do not know, but I did not take this as a final outcome and argued with the doctors that there had to be something they could do. No matter how much I argued (and I was loud), they still said there was nothing else that could be done and I had to realize his adult height would be 4'11". I stormed out of there slamming doors and of course crying again. But I still did not accept this and sought out more options for him.
I started making calls to endocrine sections of hospitals around the country. I was happy when I found a doctor in Virginia that told me they were beginning a treatment to delay puberty and continue growth hormone. But the treatment would be daily injections to delay puberty and daily injections on the new synthetic growth hormone trial that was not yet approved. My biggest question to the doctor was his thoughts about taking this synthetic growth hormone and he felt it was completely safe. So I decided to go for it. This required 4 trips a year to Virginia ( I live in suburban Chicago) for 3 years straight. And boy was it worth it. After the three years of additional treatment I am happy to say Deno was a fraction under 5'7" tall!
When we thought all was said and done, after all his treatments ended, it became somewhat concerning. He was gaining weight, sleeping 12+ hours a night, had little energy and appeared to be just existing. I was now keeping up on GHD and read about adult GHD and how growth hormone was now being approved for treatment. I mentioned this to Deno, now an adult, but he did not want to hear it. Who would after all the years of injections. But one day, several years after he was off therapy, he told me he was returning to the endocrinologist. He was retested as an adult and had the extreme low levels he did as a child. So he was approved for adult therapy and back on growth hormone. Of course the years changed much for GHD and now the injections were sub-q with pen devices to make treatment so much easier without the painful injections. It did not take long and the changes in Deno were remarkable when back on treatment.
Today Deno is married, has two beautiful children. He is a living good normal healthy life. Was it all worth it? You bet it was! So what did this all lead to? I was fortunate enough to meet two other mothers along the way that believed my exact feelings. They experienced much of what I did and realized parents should not have to go through what we all faced. So it lead to The MAGIC Foundation. We were three mothers that knew we could make a difference for other families. We did not want others to face the unknown, to have information to help the road to GHD easier. We were not educated in the non-profit world but knew we had to try. I remember sitting on the floor folding our first brochure on GHD and so proud. What was funny was our husbands who agreed to let us "play" with trying to organize a foundation. As I tell mine today........ when there is a will there is a way. And now MAGIC is the leading worldwide organization for growth disorders in children and adult endocrine disorders. I am proud of my endless fight for my son and equally proud of being a part of making MAGIC what it is today.
I could go on for pages and pages summarizing all the experiences with Deno. The name calling, the constant remarks from others as to why he is so small. The shocked faces when they were told how old he was when he appeared to be so small. The school difficulties and so much more. But these experiences are enough to write a book. Maybe when I retire from MAGIC....................but I'm not ready just yet. I love helping other families and love even more knowing I can help make a difference in a child's life.
My only hope is that MAGIC stays strong and continues to help families. You can help as well. Your personal stories are always great for our newsletter and your membership and/or donation will enhance the support and education we provide. Hopefully MAGIC has been there for you!
If you ever want to talk you can email me at firstname.lastname@example.org.