Friday, July 19, 2013

Ganglias, ventricles, say what?!

My day couldn't have started out any better yesterday!  When I logged in to Facebook while drinking my morning coffee, I was thrilled to see a post from a friend that she seen Carter on the front page of the newspaper!  Our little hero made the front page again and it is a beautiful article!  I was on top of the world and nothing could shake me.  But soon, Carter was getting home from school and we had to head to his 6 month follow up with his neurologist.  Things have been going so well lately, that I couldn't think of much to say at his appointment besides, "well, for once, all is well and I'm not here in a ball of tears".  She was very happy to hear about all of Carter's progress and stability.  Half way through his appointment, she explained to me again how he has a lot of dystonia and that with the type he has, it's usually caused by some sort of damage to the front area of the brain where nerves are controlled.  She said it is common in children with Mitochondrial Disease.  She then proceeded to ask me if he has any issues with his ganglia's and ventricles.  I said that I know there are issues with his white matter and ventricles but I wasn't sure about the ganglia's.  I reminded her that he had recently had a brain MRI so there should be very new and accurate results.  She pulled it up on the computer and began reading where the issues are but reassured me that the scan was stable.  She clicked on the images to show me where the areas of concern are and what it means.  I had heard the terms many times over the years but had no idea where or what it meant.  She scrolled through his brain very much like I did on the computer reading Carter's article earlier that day.  She showed me where there is enlargement and abnormalities with his ganglia's.  She told me the anatomy of his brain is perfect, but in the middle of his brain, where all those confusing terms are, had some mild damage.  Mild damage that is irreparable and has everything to do with Carter's struggles.  I asked her the question that we have wondered about for years...could this damage have been caused during his birth?  Her answer astounded me and threw me off balance.  She replied, "yes it could.  When we see damage caused during births, this is what we usually see".  No one had told me that before.  I had never asked.  I have always been so afraid and devastated to think that maybe something had went wrong that could have been prevented.  My OBGYN never made it to his delivery because of miscommunication and a nurse delivered Carter.  The doctor only checked on me twice and very briefly during labor.  I remember his heart rate dipping as I progressed so quickly and pushing for a good 20 minutes or so.  When he was born, he struggled to cry and was very purple.  The nursery team swept him away from me only a minute or so after he was born, to get him breathing better.  He spent the first day in the NICU to make sure they got all the fluid out of his lungs and he was breathing well on his own.  That whole day is a blur in my memory.  It was a day that I thought was perfect and normal.  What if something could have been prevented?  What if that day and one mistake changed the rest of Carter's life?  I'm struggling with the possibilities.  Carter is finally progressing at 4.5 years old, but he will always struggle and have to fight so hard to do things that are normally easy for others.  We still don't know what his future holds or whether he will ever be able to communicate.  Things that have been robbed of him.  Things that no child should ever have to go through.  Over the years, doctors have always reassured me that I did nothing wrong and there's no way I could have prevented or changed the outcome for Carter.  I have found peace in those words.  His Mitochondrial Disease is a part of his make up, something that was inevitable from the moment he was a tiny ball of cells.  But could he have been functional and only had mild symptoms of his disease had his brain never been compromised due to something during delivery?  This now haunts me and scares me.  I'm not really sure what to do at this moment as far as asking more questions or finding out what the chances are that this is what happened. I'm not sure I'm ready to know the answers to this.  I've been safe inside this little bubble I have created and I have found strength and peace along the way.  We will let this new news sink in and process.  The strength with build and my fire to fight will grow.  I will get there.  But for now, I am going to keep looking at his newspaper article titled "Little boy, big miracles" and smile.  Those words are so perfect to describe our little warrior.  No matter why or what caused his medical problems and struggles, he is the epitome of those words.  He is a miracle despite what those medical terms mean.

 Carter made the front page!

1 comment:

  1. Found via an article on Yahoo! Shine (Canada)... Our daughter has mito also. She is nine. I hear your anguish as you contemplate what might have been. We have been there, too. However, we have come to realize that our daughter is God's gift to us just the way she is. They way she has changed us and our family is His work. We don't understand it all, but we trust that He is good. Blessing to you and your family on this difficult journey.