3 Years Ago - Hemihypertrophy

I was looking at my Timehop this morning, as I do every morning, and I saw Fisher's 9 month photo. Two things came to mind immediately. 1. How fast time has flown. 2. When I took that photograph, we were about to head to his 9 month checkup, and I had no idea how everything would "change" in an hour or so.

When we got to his 9 month wellness checkup, I went in assuming that we might get in a little trouble because he wasn't cruising yet, and I knew that was our homework for this visit. But other than that, I expected a clean bill of health, just as we had always gotten with Finley and Fisher up to this point. While Dr. Watts was examining him, she noticed that one leg was larger than the other- in circumference and in length. This started a whirlwind of emotions and questions. Unfortunately, Google did nothing to ease my mind or heart. We went to an Orthopedist, a Geneticist, and eventually, even an Oncologist. To sum it all up, Fisher was diagnosed with Hemihypertrophy. Google it if you'd like, but everything on Google about this is scarier than it is in real life.

That's why I'm writing this, actually. I've had multiple mamas reach out to me because they've found me on Instagram or through my blog, and their kid has recently been diagnosed with Hemihypertrophy. So this is really for them. Here is the breakdown of why Hemihypertrophy is scary.

1. The obvious is because for some reason, hemihypertrophy is linked to Wilms tumors in young children. HOWEVER, the percentage of children with Hemihypertrophy who actually develop a Wilms tumor is extremely low. And I'm even hesitant to believe it's as high as it says, because I think that a lot of these children are diagnosed with a tumor, and THEN it is discovered that they have Hemihypertrophy. I think that there are several cases of Hemihypertrophy that go undiagnosed, because they are not that noticeable. Heck, I didn't even noticed Fisher's leg overgrowth, and I'm his mother! I was changing his diaper, and kissing those chunky thighs every day!

2. Because of the fact that whatever is overgrown, can continue to grow at a faster rate than the rest of the body. But, there are so many doctors and specialists that stay on top of everything, and they are ready to use their expertise. And, there are a lot of cases, like Fisher, where the overgrown area never outgrows the other areas anymore than it already is.

3. There will be so many blood draws and ultrasounds, and the thought of a baby having their blood drawn every 3-6 months is so sad. Well, this is true. But guess what? They get used to it. And so do we. And every time they're drawing his blood, I think, "This is just them staying on top of everything. We have to do this to make sure nothing is changing. There are lots of other moms and dads who only wish that these blood draws are the only thing they had to worry about.

4. What if the lab work shows an elevation? That means a tumor! Turns out, it doesn't. I got a horrible call on a Friday (of course it was a Friday, which meant I had the whole weekend to think the worst), that Fisher's tumor indicator lab work came back higher (and it should never go higher). They said his ultrasound was clear, which meant they didn't see a tumor in his abdomen. Through tears I asked, "Does this mean he could have a tumor somewhere else?!" The nurse hesitated as she said, "Yes." We were referred to an Oncologist the following week. And you know what he said? He said that everybody overreacted. He said that the number, though higher than it was initially, was nothing to worry about. That if it was 21000 instead of 21, then he'd worry. But that he'd like to keep following Fisher. So, he pretty much took over the case from the Geneticist. He started ordering the labs and ultrasounds instead of her. And he examines him every 6 months. I embrace this as just one more set of eyes making sure that everything is going well.

Basically, if I could go back to myself 3 years ago, I would tell myself that it really isn't a big deal. I mean, it is, but it isn't. The specialists know what they're doing. Everyone keeps a close eye on my boy as precaution. He's totally normal, he has no ideas his leg is bigger, and nobody else can tell, either. So to all of the mamas with kids who have recently been diagnosed with Hemihypertrophy/Hemihyperplasia, I know it's scary right now. Dr. Google is scary. I only hope that Dr. Google leads you to this blog post to calm your nerves and heart.


Unknown said…
Thanks fot this 👍🏻😊 still would have one question, so would appreciate if you have time to message me.

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