Have you ever had that feeling that you are the only one out there in the world that has ever dealt with something so rare that there has only been some research done on it? That no one but doctors, surgeons, and pathologists understand the words or language you speak? That there is no other mother out there that truly understands what you are talking about or what you have dealt with? That you have no one out there in the entire world (although you know there are a few people out there but they have no names because they are all research cases) that just gets it? Or that there is no one out there that Claire will be able to talk to about certain things that get it?
Fortunately (or unfortunately – however you look at it), there are lots of Heart Moms out there that I have been able to connect with to that have helped us through Claire’s heart journey. But I have never been able to find anyone who had the same liver disease as Claire. I know there are other cases because you can read the research on them. But if you Google Hepatic Mesenchymal Hamartoma (HMH), all you get are medical journals and articles. No other blogs, no Facebook pages, no support pages, nothing. I had even told Dr. Kapur (the pathologist who put all the pieces together from Seattle Children’s Hospital) that if he ever met someone else through his studies and research that had HMH, to please give them my information and tell them to contact me. I think just knowing you are not the only parent out there who has dealt with HMH makes you feel a little better? I don’t know. You don’t want another child to have to deal with it, so maybe that’s not fair for me to say. Misery loves company? Maybe so. I think of it more as I need that support. Someone to talk to that has experienced the same thing. They “Hey – I’ve been there!” support!
Well, by fluke the other night I was looking at my messages on Facebook and discovered that I have an “Others” folder I guess where some messages go instead of the inbox. I had 4 messages there so I started looking through them to delete them. One was about an event that I obviously missed. The next one was from someone I didn’t know and was dated April 17, 2012. Over a year ago! It started out like this: “Hi Rebecca. I came across baby Claire’s blog today when researching liver tumors. Turns out our little ones had the same type of rare liver tumor (Mesencymal Hamartoma)………”
It was like a lightbulb moment where all of a sudden I didn’t feel so isolated anymore! I know, I know….I am not the one with the HMH. Claire is. But she is not yet old enough to talk to anyone about her experience. I am the momma who needs the other momma to say “Hey girl, I feel your pain. I get you.” And that’s what that Facebook message said to me.
So over the past week or two we have shared stories, concerns, research, doctor’s information, experiences, and other questions we have had along the way. Although Claire and Dylan had the same rare tumor at almost the same time 2 years ago, they have had some differences. While Claire’s presented in-utero and she had her liver resection surgery at 7 months old, Dylan’s HMH didn’t present until he was 8 years old. Claire’s cysts were mainly fluid filled, with a few small solid cysts. Dylan’s cysts were mainly solid and sclerosed. Claire’s HMH was determined to be linked to the Androgenetic Biaparental Mosaicism and Placental Mesenchymal Dysplaisa, but doctors are still unclear the source of Dylan’s HMH. Claire had the heart defect where Dylan has autoimmune issues – both of which doctors are unsure if they are connected to the HMH.
There are just still so many unanswered questions from both experiences as to why this all happens. But now that we mothers have found each other, maybe we can figure things out together. We have found out that we have a lot more in common than just our children having the same rare liver tumor from our faith in God, to our similar jobs at the hospital, to both having lived in NC, to even our birthday. Our struggles to find the answers to our children’s medical issues and having to prove to doctors what we think is the answer is also something we have both dealt with.
I am so thankful I figured out how to look in my “Others” box on Facebook. And thankful that Alysia didn’t think I was being rude when I didn’t reply to her for over a year! But it’s kind of ironic if you think about it. Her message was in my “Others” box. To me in the world of feeling alone with Claire’s rare liver issues, I found that there really are OTHERS out there.
The Scott Family