I apologize for the length of this story! But in dealing with 3 generations of growth hormone deficient people....it takes a while!
June 4th- was one of the happiest days in my life. The birth of my first child, Courtney. As the pediatrician checked her over and all was "A-OK", I joyfully and sincerely said my prayers of thanks.
For the next 18 months, her father and I watched over every move she made and marveled at every silly thing. We just knew our child was the best child in the entire world! She was given one hundred percent of our attention and every toy imaginable, including toys from supermarket aisles. I admit it, she was spoiled rotten...Her queen of the castle life lasted until December 29th of the following year when our second daughter Ashley was born. The reality of having two perfect children put a fast halt on our bank account!
When Courtney was 3 years old, I expressed my concern to the girl's pediatrician that she didn't seem to be growing well. Her baby sister was almost the same height as she was. He just looked at all 5 feet ) of me, smiled and said, "Don't worry…she's fine." But something inside me was just nagging... I just had a feeling. For the next two years, at each check up I heard Don't worry.
By the time Courtney was 5, I had gotten tired of the don't worry be happy scenario. Her younger sister Ashley was now the same height as her "big" sister and I was beginning to panic. So again, at her annual check up I expressed my concern. The pediatrician said I was being a hysterical and over anxious mother. Now I wasn't being loud or anything but it was obvious I caught him on a bad day. Problem was- he caught me on a bad day too! So when he told me not to bother him about such concerns the young doctor paid for his lack of experience and tact.
I insisted that all I was asking for was for him to "listen to me" and run some tests! "Just check her thyroid", I said. But he was stern and refused! In turn I refused to leave the area and I was at this point, beginning to get loud! So the nurse took me aside. She told me to come in without an appointment on the same date each month for several months, simply to measure Courtney. And laying her job on the line, said she would give me the referral I needed to see a specialist if the measurements showed that Courtney wasn't growing normally. (Long story –military nurse outranked doctor).
Six months later, Courtney was indeed referred to a Pediatric Endocrinologist. My mothers instincts were … unfortunately …right! Now I was really afraid. So we went to the specialist who examined her thoroughly, and took a complete medical history from both my husband and me, ordered a battery of tests and sent us home. Four weeks later all the tests were in and we had a diagnosis. She had a pituitary disorder causing her to be deficient in both thyroid and growth hormones.
Completely ignorant to what that meant I thought, GREAT! Finally! Let's get the pills and get started! (You see I too had not grown normally… thyroid pills "fixed me" and I had no clue about growth hormone.) Boy was I WRONG! What was facing us now was terrifying. She did need thyroid pills but growth hormone was new (this was many years ago-1985) and required regular injections. The long term effects of this new medicine were not known at the time, the doctor explained. However, without growth hormone she would be perfectly proportioned but stand only about 4 feet 2 inches tall as an adult. She asked us to go home, discuss it thoroughly, and get back to her with our decision.
My husband and I were scared to death. We were young parents (25 years old) and had no clue how to deal with all of this. During our 45 minute drive back home from the doctor's office, we tried to be playful with the kids, singing and keeping them busy. Occasionally we glanced at each other and quickly look away fearing that we would loose control and break into tears.
The decision to use growth hormone or not was tough. We could not make this decision alone, we needed help. We love our daughters, they are our life. To have Courtney healthy at the height of 4 feet 2 as compared to the uncertain possibilities was strongly considered. Yet, to choose to make her live her entire life the size of a child was something we had to seriously consider.
The deal breaker for us in our decision came in two parts. 1- There were serious aspects that growth hormone affected other than her height which we could see... Her heart size and strength, her lung development and strength, her bone strength, immune system function, and much more were all affected by her lack of growth hormone. We had a lot to learn....fast!
I called my parents. I am blessed to have a mother who does not EVER let any detail go un-researched and a father who was a hospital director with access to people and inside knowledge. It was a serious call. Their first born grandchild's life was in the balance and they tackled the job with the fierceness of a protective lion. After several weeks of agonizing waiting, my father finally called. He said, "It's safe. I can’t tell you what to do but if it were me I would go ahead with the treatments." He relayed all of the information he had gathered piece by piece. I knew that this very protective grandfather would have never made such a definitive statement without complete faith. We made our decision to go ahead with the treatments and called the doctor.
We made an appointment for the next day, to learn how to give her the shots. The evening before the "lesson day" was horrible. We sat down with both girls, one in each of our laps. We explained the events and the situation as best we could... for a 5 year old child. Courtney did not act concerned. I do not think she was capable of grasping the situation or willing to believe us. We tucked the girls in for the night, and went to the family room. We sat -holding each other- side by side in silence for hours. There were no words left to say, only tears.
My thoughts raced...I will be brave. I have to be strong so that Courtney will not be afraid. Oh God, please help me make it through this and please let this decision be the best one for her...How is she going to react? Is she going to hate us? Can I actually push that needle into her tiny little body? My mind was out of control. All I could do was hang on and keep going.
Shot Lesson Day- June 9th. My husband’s Birthday! Poor guy! The party activities helped distract Courtney. Yet, every smile on her little round face brought doubt in our hearts...would she be the same sweet child after all of this started? What if our decision is the wrong choice? We dressed the girls for the doctors office and began what seemed to be the shortest ride ever to the hospital.
I DON'T WANT TO BE HERE , I thought, as we pulled into the hospital parking lot. But being the adult, I composed my nerves, gathered Courtney in my arms went into the office. Dad gathered up Ashley, and put his arm around my shoulder playing with Courtney's arm which was clinging to me. My throat ached with a fierce gripping sensation. Trembling hands signed my daughters name on the waiting list, as I tried to smile.
She jumped a little each time a name was called out, but quickly returned to play upon hearing someone else's name. COURTNEY HARVEY, the nurse's voice echoed...I looked at my husband. I was taking deep breaths to keep control. Without a word he gathered Courtney up in his arms, kissed her cheek, and headed down the hall. I stayed behind in the waiting room with Ashley.
James, (my husband) learned the details of preparing the syringe etc. alone. About 30 minutes later he reappeared ghostly white with Courtney in his arms. She was smiling. She thought it was all over. Poor Dad was trying to keep his “public” composure as he had just given his baby her first shot with a nurse training and watching over him.
The next evening I picked her up and said, "OK baby, now it's time to get your shot" and reality hit the 5 year old. When faced with the inevitable, she began kicking and screaming. James had to close her in the bathroom with him because we couldn't contain the frenzied child. I stood in the hall leaning on the closed bathroom door with tears flooding my face. I gripped my mouth with both hands to hide my own gasping sounds as I heard my baby yell and beg her father to love her...please don't daddy...I'll be a good girl...I PROMISE! Ashley held my hand and quietly waited.
I heard one final scream and then my husband appeared. He was pale, shaking, and holding her in his arms. And without words, he handed her to me and walked quickly to our bedroom closing the door behind him. I held Courtney, rocked her and tried to assure her of our love and motives.
NOTE to new parents: The old style of injection was indeed a painful one. A large needle was used. We had to push the needle all of the way, sometimes hitting the bone and pull it back to make sure it was in her muscle. (Today they use TINY needles and the pain is minor. Unfortunately, as one of the "first" children to benefit from this modern medicine, she was also one who taught lessons for future children to benefit from. A sad but necessary part of safe medicine.) So back to our story....
Courtney continued her fight against the shots every single time for 18 long months. She would tolerate her dad doing the shot (after a good battle), but not me. My job was the consoler. We had to explain to the neighbors that the blood curdling screams at 8:00 p.m. meant shot time. It was really a mess! We had no clue what we were doing!
But then came the day when dad (he was in the Air Force) had to leave for three months. I had been dreading this, it was now my turn...all alone. The day he left, Courtney was quiet all day. I thought she was sad about her daddy leaving. Otherwise, things were normal. That evening I prepared the syringe and went into the living room where she was watching television. She ran the second she saw me. I pulled her out from underneath the bed...she ran again and again. She was fighting me with the panic and furry of a drowning child. She was hitting, biting, clawing, and punching me in the face. I couldn't let go of my hands to give her the shot without her escaping. So I just held on, and it literally took all of my strength to do so. (Remember, I only stand at 5 feet tall myself.)
I held on to this squirming, sweat drenched child for 45 minutes before I got mad. But eventually I had enough and swatted her rear end. As this was not a common occurrence for her, it got her attention ...quickly! She immediately halted the physical part of the fight. We were both dripping wet and exhausted. She relaxed her leg muscle just enough for me to safely give her the shot. Afterwards, we talked for a long time. We came to an understanding, and to be honest...we both grew up a little that night.
From that night forward, she did her best to tolerate the injections with only a few occasional whimpers. No more running and hiding. No punching or kicking. It was amazing!
A few weeks later, we received a BIG blessing-we began using the small insulin needles like the ones used today. This made her very happy and life seemed good!
Months later, James finally returned home. He was shocked at her progress. I don't know who was more proud, Courtney or her daddy. The smiles were genuine and frequent. But wait...she had one more trick up her sleeve.
Two weeks after daddy's arrival it was Mother's Day. Again Courtney was quiet all day long. I thought, "Oh no what is going to happen now?" Ashley colored mountains of pictures for me, and James took us out to dinner. When we got home it was bed time and that meant the shot. Courtney came to me in the kitchen. She looked up at me with the nervous innocence, and big round eyes special only to a child. She said, "Happy Mother's Day Mommie! ....for your present I'm going to do my shot all by myself", and she produced a prepared needle from behind her back. My first thought...yeah right! But I held my tongue.
I followed her to the family room standing in the doorway. I never believed, not for a second that she could do this. She was trembling. Slowly she began to wipe her leg with an alcohol pad. She wiped and she wiped and she wiped. It was the cleanest injection site in the world! Then she picked up the syringe. She held it over her leg for a minute and with her eyes shut tight. Her bottom lip was sucked in so hard that it was invisible. Her tiny hand was shaking...Then she opened her eyes, and thrust the needle in her thigh. She whimpered slightly as she pulled the needle out. Then she looked up at me , "Happy Mommie's Day" she yelled with the BIGGEST toothless grin from ear to ear.
I cried and cried and then cried some more. Mother's Day 1988, I was given the gift of sacrificial love from the tiniest of sources...my baby girl.
You know there is a saying that the Lord will never give you more of a burden than he knows you can bear. I believe this to be true. However, since the experience with Courtney - my life took not just one but three more dramatic turns. And due to those events the Lord and I have had some loud conversations. Some of which I am terribly ashamed of!
You see my baby daughter Ashley, broke her arm about 2 months after Courtney gave me my Mother's Day gift. To look at her you could not tell "for sure" that it was broken but we we were concerned enough that we took her to the hospital to be sure. Apparently, it was not an "ordinary" broken arm. As a matter of fact it looked so bad on the x-ray that the young X-ray technician thought we had been abusing her by breaking her arm hundreds of times! Hearing that "review" we immediately questioned their competency and expertise. Long story- almost arrested for child abuse by military staff---So we left that hospital and drove directly to the closest Children's Hospital an hour away.
After hours and hours of many doctors reviewing the x-rays and talking with all of us- the staff called the Chief of Orthopedics to the hospital. Now 4:30 in the morning, he examined her and reviewed the x-rays. And after tortuous hours waiting he told us that she had a rare condition called McCune-Albright Syndrome. Among other things it causes a bone deterioration. No treatments. No cures. Yes it does continue to affect more bones etc., etc. The words were so horrible I began blocking their entrance into my brain.
My husband and I were in shock! We just could not believe what they were saying! She looks perfectly healthy! How could two normal and healthy adults have not one but 2 medically challenged children with such rare stuff? We thought they just cannot be right!!!
Fortunately, because of Courtney's growth problem I had met (and began MAGIC) with some incredible Mom's. Mary Andrews, Teresa Tucker, Dee Glidewell, Ellen Gibson, Linda Albright and I had all been "networking" with families and physicians throughout the country. Therefore, upon my arrival home with my baby, I immediately picked up the phone to call Mary Andrews. She gave me the name of a nurse In Virginia- who gave me the name of another nurse at the National Institutes of Health- who knew of only 18 cases of McCune-Albright Syndrome in the US- and gave me the name and number of another mom with a chld who had this same problem. My third call was only an hour and a half after I returned home from Children's Hospital and it was to a mom in Ohio who literally talked me through my pain and fear. We were on the phone for at least an hour.
As time went on, it appeared as if my daughter was only mildly affected by McCune-Albright syndrome. Her symptoms were slow to progress for some reason....
Five years after her diagnosis we found out why. Ashley had gotten up three times before midnight to go the bathroom. This had been occurring off and on for a few months so I took her to the pediatrician. I thought she might have a bladder infection. The pediatrician literally took one look at her, smelled her breath, took some blood, and personally walked us to the lab and stood there with us while we all waited for the results. This put me on high alert but I instinctually did not ask her why she was doing this...I learned a long time ago that if you ask...you will be told! And there are some things that can wait!
The lab tech handed her a piece of paper. The doctor glanced at it and walked us back to her office closing the door behind. Looking at the paper she said, "Mrs. Harvey, Ashley has diabetes." (The developing diabetes had somehow stunted the progression of the McCune-Albright Syndrome bone disease.) Ashley didn't know what diabetes was. But upon hearing the words I gasped. Ashley looked at me and saw tears streaming down my face. This little baby all of ten years of age, put her tiny arm on my back and began patting me! Then she looked directly into my eyes and quietly asked, "am I going to die?" It was quite a while before I let go of her ... I even carried this 10 year old kid over to the doctors desk to call my husband. (She too was small and skinny for her age.)
At this juncture I once again, relied upon MAGIC to help me through the initial emotional trauma. There is no compassion better given nor received than that of a parent who has lived the trauma. And as we continue to battle the sometimes overwhelming problems encountered by children with medical problems, we continue to rely heavily on each others support. Ashley did not experience problems most children going through similar problems experience, due to the fast networking of other children "just like me". You may be able to handle things...but remember- it is for the children that networking does its greatest healing!
Sometimes people ask why I give so many details about Courtney's medical problems and skip over details about Ashley. I was bothered by this until I finally realized that due to the intense emotional trauma overload of having not one but two affected children, one of which is life threatening, I can only deal with so much. And the more serious the problem, the more I tend to internalize. Like my oldest daughter, I get quiet when things are tough. When I reach my overflow limits, I call for help. I call MAGIC and I get exactly what I need to help my children.
Today, Courtney stands 5'3" tall. She is beautiful, intelligent and laughs all the timer. Ashley is also beautiful and intelligent with a stubborn streak to compete with anyone! Love it! She has a fighter's independent spirit, and an I can do anything attitude. Many people have commented on what a good job her father and I have done in raising two physically challenged, yet emotionally stable children. In all honesty, we could not have done it alone. We could not have done it without our parents, each other, a great deal of faith nor without MAGIC. I personally, could not have made it without Co-founder Mary Andrews. She sits at the top of MAGIC for a very good reason! She is amazing!
There is nothing, absolutely nothing more comforting than another parent who can say those words from experience...everything will be ok. It feels as real and as reassuring as the big bear hugs our parents gave us when we were children.
And now that medical technology has once again pushed forward, the important role of growth hormone in the adult body is being not only recognized, but also treated. We are all in this together. And since the issues are "rare", if we don't band together, there will be no one for those who follow.
Please, please consider a donation to help us keep going! Thank you.
Update
Courtney stopped GH therapy at age 15. Two months later, we took a huge trip (for us) to France in celebration. When we got home she began to lay around the house a great deal and generally felt tired. It was a really hot summer and thought she would bounce back. But when I was in Chicago for the Annual Convention, I got a phone call that she had been med-vac'd to the hospital and hour away. Long story short...she started "passing out" 30-40 times a day. We took her all over the country to find out what was wrong this time! Many people diagnosed her with many things...She continued a downward spiral. She could not stand or walk for ANY length of time without "passing out". Her dreams (which she had been approved and signed up) of being an Air Force pilot via the Air Force Academy were lost...many long awaited and worked for dreams were lost...I kept begging doctor after doctor to "try" GH because the symptoms appeared only a short time after stopping it but no one would listen. And now that Courtney was an adult, I couldn't force her. She naturally would not press it because she never wanted to take shots again. Fast forward 10 years later...she started going blind from an "old persons" atrophy of the muscles! She called and explained that she needed me. She could no longer care for her kids without help.
I flew from Georgia to the Midwest, where she was now living with her husband and 2 fantastic baby boys...I took her to more than 5 adult specialists (the adult endocrinologists had no clue!)...Her vision was now almost legally blind with glasses. We were in full blown emergency mode! Unable to find anyone who would take the time to realize her entire medical history and take it seriously, I flew her back to Florida to see her pediatric endocrinologist. I literally had to BEG for the appointment. Upon seeing her, he took one look at her and said- "what happened to you?!!" .... He knew immediately and gave her the prescription for growth hormone.
It took months of waiting etc. but she finally went back on GH. Her vision returned to normal with only a few days! And to top things off...10 days after starting she no longer needed the handful of drugs she had been taking for years (heart meds etc. to stop her from passing out)! Gone! Just like that! She no longer needs them! If they had only listened to this stupid old mom a long time ago.... Lesson learned: never take for granted that this problem is something minor which is just a growing problem. It affects the persons entire body and for a longer time than we previously thought. But NEVER mess with hormones for anti-aging etc. if your body is balanced...you might just end up a whole lot worse!
In 2013 Courtney's youngest son was diagnosed with growth hormone deficiency. This is after years of chasing symptoms! So we have a genetic marker for GHD which is being passed from mother to child. It just kills us to live so far from them all and we miss them everyday!
Thankfully, Ashley's remains very healthy. Today she is 30 years old, lives close to me (YAY) and has had no significant problems with her McCune-Albright Syndrome or diabetes. She is one tough lady and the mother of two daughters. Both girls are totally healthy, lively and as stubborn as their mom. We have a blast together! Who ever knew that diabetes would be such a huge blessing?