Hemihypertrophy Update

Fisher had his three month ultrasound a few weeks ago, and when I posted a photograph of him on Instagram, I clicked on the hashtag #hemihypertrophy. When we were first told about hemihypertrophy when he was nine months old, there was NOTHING to find on the internet other than scary information. I started using the hashtag, and there was only one other person who was using it at the time. She was a teenager, and she was inspirational. Fast forward to now, and there are thousands of posts using it, which is great. I have had no less than 15 mothers reach out to me from all over the world to ask me questions about Fisher. Several through broken English. They're terrified. Their doctors don't know much about it. And they're trying to find anybody else in their situation who can help them understand what in the world it all means. I love it when they reach out to me, because I was once in their shoes. I was scared and confused and everything I read was negative. I actually posted a blog when we initially found out. You can read it here. Fisher had to have routine lab work, which was really hard to witness as a mother. And he had to have ultrasounds on his abdomen every few months. At one visit, his lab work came back bad, and they referred us to Oncology. This was one of the scariest times in my life. Here is a post about that. As it turned out, everything was fine. So Fisher's normal visits included ultrasounds, labwork, visits with Orthopedics, visits with Genetics, and then visits with Oncology/Hematology. I didn't like posting on social media too often about it because I didn't want it to come across as some attention seeking thing. However, I wanted to continue to educate other mothers out there who were scared and felt helpless and hopeless. And that is what the point of this blog post is, actually. We've since graduated out of the labwork stage, and no longer go to the Genetics office. We don't see our Oncologist anymore, but instead, we see a new doctor who specializes in genetics and oncology together. She has us do ultrasounds every 3 months, whereas before, we were doing them every 6 months. We no longer see Orthopedics twice a year. We just have to go once a year. Orthopedics will follow Fisher through his teenage years. I believe the ultrasounds can stop at age 8. (The point of the ultrasounds is to check for wilms tumors. But when they turn 8, the likelihood of a tumor drops significantly.) These appointments feel like no big deal to me, anymore. It is what it is. His leg is longer than the other one by a small amount, and his thigh is thicker than the other. I'm never worried about a tumor. But like I said above, I recently clicked on the hashtag #hemihypertrophy on Instagram, and I was actually horrified to see what some mothers were posting. Their accounts seem to be dedicated to the fact that their child has it, and all of the statistics they are sharing are NOT the statistics that any mother would want to read. I sent a message to one of the mothers asking her where she got her information. She messaged me back that her child had a unique form of Beckwith-Wiedemann syndrome, and his statistics vary from most of those with the syndrome. However, on her Instagram, that wasn't evident. Her post said, "...Beckwith-Wiedemann Syndrome, our sons rare syndrome which gives him a 1 in 4 chance of developing cancer." I was just completely horrified. Her son has a very, very unique version, yet the use of the hashtag and the lack of detailed information is enough to scare every parent who has a child with hemihypertrophy. My goal is to let mothers know that it's okay to worry, but it is not nearly as bad as it sounds. There's a major lack of information on the internet about it, and moms go online to try to find any other information to which they can possibly cling. And yet, some of these Instagram profiles have posts that would have scared me to death in the beginning stages of processing this. Here are some facts: 

The risk of developing cancer is estimated to be 5 to 10 percent, but that risk may vary depending on the specific genetic cause of the child's condition. ... Hepatoblastoma, a cancer of the liver, is the second-most common cancer in patients with Beckwith-Wiedemann syndrome or isolated hemihypertrophy. 

Most children and adults with Beckwith-Wiedemann syndrome do not have serious medical problems associated with the condition. Their life expectancy is usually normal.

5-10%. That is low. And remember, ultrasounds are being performed every 3-6 months, depending on the patient. This means if a tumor is found, it's found super early. The point of this post is that I want parents to understand that it is not a death sentence. And some of the information you're finding on social media doesn't pertain to your child. Of course I'm not a doctor. But one of the most common fears that the parents who reach out to me online share, is that their pediatrician doesn't know much about it, and doesn't really know what to do. Well, my recommendation on that matter is to beg them for a referral to a geneticist. That's where the ball will start rolling, and your child will get into all of the specialists he/she needs. Fisher is totally fine. One of his feet is half a size larger than the other, so we just go up a size. One of his legs is longer and one of his thighs are thicker. So what? It hasn't caused any issues. And orthopedics is there to follow him throughout his entire growing journey to intervene if it does start causing issues. So moms and dads with children with hemihypertrophy and/or Beckwith-Wiedemann syndrome, just know the correct statistics that apply to your child. Not all of them are the same.


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