Putting a Face to a Debate - Part 1

Three weeks and counting.

It's been three weeks since Jonah has had his medication. Not because he doesn't need it anymore. And not because his chronic condition has changed whatsoever or because his doctor has changed his prescription. But simply because we changed insurance companies when Steve transfered to UCD and we are once again in the middle of an exhausting and spirit-crushing battle to get our son's treatment approved.

I realize that some of you may be tired of hearing about the health-care reform; some may feel uninformed and confused; some might be earnest supporters of the proposed plans for reform; and others of you might feel that there is no need for reform whatsoever. Regardless of where you are at with the issue, I hope that you will take the time to at least learn about the families for whom the current system is not working. Ours is one such family. I never in a million years would have imagined that we'd be in this position. But here we are. And while I don't normally share much about this publically, I thought now might be an appropriate time for me to be courageous and share Jonah's story - to help put a face to this debate.

Jonah was born healthy and ready to take in all excitement the world had to offer. We did all of the routine doctor visits when he was a newborn and everything was "normal."


But at his 6 month check-up, things changed. After charting Jonah's height and weight on the growth curve, our doctor had a look of concern on his face. Assuming that the Medical Assistant had made an error, the doctor decided to measure Jonah himself - twice. He got the same results each time. He then informed me that Jonah had not grown much, at all, between two and six months of age. In fact, after 2 months of age, Jonah had a sharp decline in his growth rate.


Honestly, I wasn't too concerned. Jonah had been diagnosed with food allergies at 5 months of age, so I wondered if his small size was in some way related to that. Plus, Steve and I aren't exactly the tallest people in the world, so I told myself that perhaps Jonah was just going to be a small baby. So when our doctor told me that he was referring us to a pediatric endocrinologist for an evaluation, I was super impressed by how pro-active he was being and just assumed that we would go for the tests and "rule out" any complications (isn't that what tests are for...to rule things out?)

At 7 months of age, Jonah had his first visit to the pediatric endocrinologist. He echoed our primary care doctor's concerns over Jonah's growth rate and for the first time I began to accept that there might be something "wrong" with my baby's health. Not long after, a series of test were performed (blood work to check his hormone levels, thyroid studies, chromosome studies, an abdominal ultrasound, chemistry panel, bone-age x-ray, and the worst part...an MRI to rule out a tumor on his pituitary gland). That was a really hard time for all of us - shuffling our baby from doctor's office to doctor's office where strangers in lab coats would poke and prod him under flourescent lights (which he hated!). We were very fearful and didn't understand why our son wasn't growing.

When the results of the tests were in, we had a very clear diagnosis: Growth Hormone Deficiency. The numbers spoke for themselves: his levels were very low, indicating that his pituitary releases almost no growth hormone. And while it was unsettling to have a label put on my 8 month old child, it was comforting to know what we were dealing with, so we could make a plan and move forward.

The doctor explained that there is a treatment for GHD, a synthetic form of growth hormone that is injected daily into the patient. With this drug, a child can grow at a normal rate. However, he also explained that a small percentage of children experience complications from this drug(diabetes, leukemia, and scoliosis to name a few). I really did not like hearing that and Steve and I spent several months researching this condition and it's treatement. Steve studied the biology and chemistry behind it all and I joined an online support group (goes to show you how different we are!). It was a confusing time and we knew we had a very big decision to make - whether to move forward with treatment or not.

We knew we needed a second opinion before making our decision, and by the hand of God, we were sent to Oakland Children's Hospital. Our hope and prayer was that we would leave the appointment being sure of what our next steps should be. That's exactly what happened. We were given an amazing, smart, compassionate, articulate team of doctors who met with us and went over all of Jonah's results. And the best - but hardest - part was that they told it to us STRAIGHT. They didn't sugar-coat or mince words. I can remember the doctor saying to us, "this is one of the most clear cases of Growth Hormone Deficiency I've ever seen." I can't tell you how hard that was to hear. (How did that happen to my baby?) Yet, it brought me so much clarity. I needed her to say it to me just like that.

In regard to treatment, this doctor said, "Growth Hormone therapy was made for children just like Jonah. He is the ideal candidate." She gave us a clear recommendation. She didn't waffle and talk about what-ifs. And when we left, we were certain that we needed to move forward with treatment for our son.

(The picture below was taken two weeks after our visit to Oakland Children's Hospital. Jonah was almost a year old and he was the height of an average 4-5 month old).


From there, getting our insurance company to approve Jonah's medication was an arduous and upsetting process. There were denials and appeals and finally...an approval. Next, Steve and I were trained on how to give our son a daily injection and at 15 months of age, Jonah started his lifelong treatment.

The nine months of time between our doctor's first look of concern and the day Jonah started treatment was filled with ups and downs. I was highly sensitive, emotional, and protective of my son during that time. I hated going to the grocery store because I knew that someone would inevitably ask me how old my baby was...and then follow-up with a comment about how small he was. That was an arrow to my heart each and every time. I often got sad while dressing Jonah in the morning because it was a daily reminder that his clothes were not the size they were supposed to be for his age. I even remember crying one morning as Jonah and I were listening to a children's CD and a song came on called, "Everything Grows." The lyrics said, "Everything grows. Everything grows. Things are growing everywhere. Everything grows." I yelled back at the CD player, "NO, it doesn't!"

And while those times were painful, they also produced some good. My love for Jonah grew exponentially during that time! My heart was knit to his in such a special way through that experience.

And look at him now! He is a kind, happy, friendly, bright, energetic, beautiful, average-height four-year-old! We love every inch of his being.

For now, we wait - for the "powers that be" to send us the medication that our son needs to grow. More on that in another post.