The Blazers Game Theory

Since Jade has started growth hormone therapy, I thought now would be a good time to talk about why we originally decided against it. It’s kind of a crazy story, but let me preface with with the fact that our original notions about it were uneducated and based on hear say as opposed to actual research on our behalf. 

Years before we were ever pregnant with Jade, we knew someone who told us that her brother had issues with growing and was put on growth hormone. This was the first person I had ever met that had gone on it and I had never even really heard much about it before. This person told us that even though it helped her brother a lot, there was minimal research done on side effects and so they didn’t know what his future would hold, which could include an early death. I was honestly quite shocked to hear that her parents had gone through with it knowing the risks. To me, growing more did not seem worth a potential early death. That left me with a very ominous impression of growth hormone.

Fast forward several years later when we were going through all of the initial shock of Jade’s Turner syndrome diagnosis and learning all about it. We came to find out that growth hormone is highly suggested for girls with Turner Syndrome, because they have trouble growing to an average adult height. Of course when we heard this, my mind went back to what the person told us about her brother and I immediately became closed off to it. In my mind, no amount of added height was worth a deadly side effect. Plus, making a decision on it didn’t really seem to matter at the time, because we were told that if she were to start it, it would be more around 9-10 years of age (now it is at a much earlier age). To us, this was future Jeff and Phylicia’s problem. 

When Jade was about 7, we started going to an endocrinologist for her thyroid. He was a really nice person and much older so he had quite a bit of experience in the field. I felt like despite all of our traumatic experiences with doctors, I could trust him to an extent. At our first appointment, I started it off by telling him I was very skittish towards doctors because of all of our bad experiences and let him know that we don’t like to do anything that’s medically unnecessary. I told him my concerns about Jade starting growth hormone and what we had heard about minimal research and side effects. The doctor listened and was very caring about our needs. He calculated Jade’s potential adult height by using mine and Jeff’s heights and he came to the conclusion that she would be around 5 ft on her own without growth hormone, and that it really wasn’t medically necessary for her. I asked him what he thought about the lack of research on GH and he responded with the strangest analogy, I will never forget it:

“If you had tickets to a Blazers game (Portland’s NBA team) and you heard that a bomb was going to go off in one portion of the stadium and kill 500 people, but you didn’t know where it would go off, would you take the risk of going to the game?”…”umm absolutely not!” I responded “Well, that’s what you would be doing by giving Jade growth hormone.” 

That is literally what he said to me…I can’t make this stuff up! 

So of course my mind was reeling. On one level I felt validated that my thoughts on her being short is what was meant to be, that she would be totally fine without it, and going this route would not be worth it if it could be deadly. And the other part of me was just too terrified to even question what he meant by all of that. 

Looking back on it, the analogy is ridiculous and makes zero sense, but it was enough for me to just shut down to the idea of growth hormone and continue to live our lives with minimal medical interventions and in a way, live in denial. I know some of you might be judging me at this point thinking, well that was dumb, do your own research, but I will tell you, you can find whatever you’re looking to find on Google and you can always find ways to validate your decisions no matter what the decisions are. We were also so severely traumatized from everything we went through with Jade as a baby that we were overly protective of her and sometimes even just plain unreasonable, because we thought we were doing what was best and didn’t want to take any risks with her.

After a short time with this endocrinologist, he ended up retiring. Jade’s thyroid problem had gotten better and since we weren’t doing GH we just felt like we didn’t need to see another one until Jade was much older when she may need to start estrogen supplementation for puberty. We just quit going and didn’t find a new endocrinologist. We didn’t really feel any impact in doing so, because Jade continued to stay on the growth chart (under the 10th percentile, but still on the chart) and we didn’t really see any problem with that. 

About a year later when Jade was in third grade, we started seeing some more noticeable issues with her growth. She is an August baby so she is already one of the youngest in her class and now we were seeing first hand that she was also the smallest. Her peers started shooting up all around her while Jade stayed at the same height. This is when the bullying began. Kids started pointing out things about her height and how small she was. She would come from school and act like nothing was wrong, but at the end of every night, I would hear her sobbing at the top of the stairwell. When we could finally get her to speak about it, it was generally something to do with kids saying hurtful things to her about her height. Her confidence began to completely deteriorate before our eyes. Our happy, friendly, beautiful girl was getting crushed, all because kids were cruel and couldn’t accept her for who she was. We worked with her teacher and tried everything to solve the problems, I even began volunteering at the school so I could be there to prevent what I could, but nothing ever got resolved and that’s when we decided to pull her out and home school. I loved having her home, but Jade is incredibly social so she couldn’t stand not being in a traditional classroom. After 2 years of it, she begged us to send her back to traditional school, promising she would be more open with us if there were ever any issues. Now that she is in 6th grade the bullying has gotten better (we’re working very closely with the school), but her growth has slowed tremendously and she may very well be the smallest person at her school.

This past summer, I started this blog and our Instagram page and started connecting with moms and other women with Turner Syndrome. So many of which have raved of the benefits of growth hormone and I was able to see through their experiences how beneficial it’s been for them or their children. Also around this time my husband’s friend who is on the shorter side told him he wished his parents would have looked into growth hormone for him when he was little, because it would have made his adult life so much easier. All these things began tugging at my heart to give it another look. So despite all of my preconceived notions, we felt it best to revisit GH again. This time with a new endocrinologist, an expert from OHSU. She was so kind in hashing out the Blazers game theory that the other Dr. had planted in my head. She said although some small percentage of people are at risk of severe complications with GH, this is in no way Jade’s case. She spoke with Jade’s cardiologist and they both agreed that she is very low risk of any complications. The high risk groups are those that have had dealt with more severe medical conditions in their life and even then, serious complications are very rare. She also told us that all of this uncertainty on the risks of GH is due to a French study that came out years ago where they did some research on kids who were given growth hormone and they found higher risk of cancer and stroke. There were so many other factors at play for these findings and back then kids weren’t monitored as carefully as they are now. So much has changed in the medical field, that it has made the study practically irrelevant in today’s world.

As you can imagine after everything, it was a huge step for us to put Jade on growth hormone. I do not believe now that there is any risk of an early death from her taking it otherwise I would not go through with it. Every case of TS is different, but if you’re considering GH I highly recommend doing your research and having your endocrinologist team up with the other specialists your kiddo sees to make sure they are making a decision that will benefit your child entirely. I hope our story about this doesn’t make us seem crazy or give you any sort of unnecessary worries. We’ve been through so much and were told so many things, it has become hard to know what to believe. We just want to share what we went through to help give another perspective on it and hopefully make things easier for those contemplating it. 

Above is a pic of us at a Blazers game this past February. We’ve gotten to a point where we’re not going to live our lives in fear of the unknown anymore. We are putting our lives in God’s hands and trusting that we are doing what’s best.