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.
