Angels on the Moon, by Thriving Ivory
I heard this song for the first time on the day my son was admitted to the children's hospital. It was the first time our local station played it and now it has a special meaning to me. I tell my son all the time that it is his song!!!
December 10, 2008
I have written a hub about the condition my youngest son has called Benign Enlargement of the Subarachnoid Spaces, but I have not discovered a way to get past the hidden emotions I still carry from our horrible experiences that happened that night and that followed in the months afterwards. I am writing this today in the hopes that if I let it all out next year on this day it won't be so painful.
Here is a brief recap of the events that day. The kids were getting ready for bed, two of them were upstairs brushing their teeth, and one was eating a bowl of cereal in the kitchen. I went upstairs to get some laundry together while my fiance and my 10 month old were playing the parlor right below me. Within about three minutes of me being upstairs I heard a loud thump and then my 10 month old let out a screaming cry. As I ran down the stairs I say my fiance picking him up from under the small wooden baby gate that was there to keep him in the parlor and not the kitchen. The gate let loose while he was standing at it causing him to fall and hit his head very hard on the floor. I took him from my fiance to try and help soothe him, but nothing would work. I thought maybe he hurt his back or something else so I laid him on the floor when the unimaginable happened. His whole body began to tense and twist up, his eyes were moving strangely off to one side, and the sounds coming from him are something I will never forget. I yelled at my fiance to call 911, and I immediately began to take off his pajamas to try and find something that I could fix. The ambulance arrived very quickly and he was taken to our local ER. They did a CT scan and discovered he had a bleed in his head and he had to be transported to a Children's Hospital that was about an hour away. I rode in the back of the ambulance with him. Upon arriving to the children's hospital we were drilled with a million questions, over and over. They did another CT and also took X-rays of his entire body. I questioned the X-rays and I was told they do that to every baby that is brought in through the ER. We waited in the ER all night to the next afternoon for a room to be available for him with no answers from the doctors or nurses. He was admitted that afternoon to the PICU floor only because there were no available rooms on the children's floor until the next day and he couldn't stay in the ER. That night they had told us our son has been a victim of child abuse that has been going on since he was around 4 months old. He had a subdural hematoma from the night he fell and they also seen old bleeds in his head. We were told the body x-ray showed no broken bones but he did however have a bruise behind his left ear. The bruise made me scream because it was not a bruise but instead a strawberry birthmark that was fading away. (hemangioma?) When I told the doctor he rechecked and agreed that it was infact a birthmark. In the coming days we were assigned a Children & Youth case worker and me and other family members had to be supervised at all times with our children. The people who required supervision were myself, my fiance, my parents, and my grandmother because we were all left alone with him at one point or another. After months of MRI's and other tests it finally came out that the doctor made a mistake. It was NOT shaken baby syndrome but instead Benign Enlargement of the Subarachnoid Spaces. Child and Youth closed our case but not willingly at first. They wanted to keep us on for 6 months but when I asked for the paperwork to show my lawyer they decided to close it. They were out of our lives, our lives went back to normal, but yet these feelings still seem to hide inside of me without a way to escape. I think if I had gotten more answers from the doctors and if we weren't treated like the biggest scums on the Earth I would have been able to find some closure. So I am trying this instead. I am going to write a letter to the doctors and the case worker in this hub with the unsaid feelings and unanswered questions and hopefully I can put my mind at ease.
Letter To Doctors
I understand why you had to look at all the possible explanations regarding why my son had a seizure. I am not mad or upset at this fact. I am more disturbed by the way we were treated as human beings. We love our son. I know you don't know that, but you should take it into consideration. Yes my son did have symptoms that are found in shaken baby syndrome, but he did not even come close to the severity sbs does to children. He had a subdural hematoma on one side, no broken bones, and not one other make on his body. How could someone possibly violently shake a 20 lb. child and not leave some type of bruise or mark on their body? Every time a new doctor or nurse came into the room we were quized on the events that happened that night, nothing ever changed. Still to this day I can recall every painful detail. I asked hundreds of questions, and the answers were always the same "most likely not", "it's indicative to shaken baby". We were scared. We thought something was going to happen to our son because you could not step outside of your "Child Abuse Expert" box and find out what was wrong with our son because we knew he was never abused. The months of testing and MRI's were terrifying. Also having the head taps done to remove excess fluid because of the risk of brain damage. You found new bleeds in February. Then all of a sudden about three months later you notice that the space between his brain and skull was larger than it should be causing the veins to be stretched and more likely to bleed for little or no reason. All of a sudden your story changes and the bleed found in the ER could have been caused by the fall, or it could have happened days earlier out of the blue. But in the beginning you insisted my fiance shook him the moment I walked up my stairs. Do you remember me questioning how a doctor could pin point the exact moment a subdural hematoma happened? All I got from you was "I am sorry, I made a mistake, and I will contact your case worker and tell them there was never any abuse." Why couldn't you answer my questions? All I wanted to know was if you knew about BESS from the beginning, and if you had to wait for the results of all the other tests were done until you can give that diagnosis. I understand alot of other things could cause the same symptoms and some are incurable and life threatening, but why was BESS the only one not said to us until the end? Someone could have ended up in jail because of your mistake, our kids could have been taken away for your mistake, and our lives could have been ruined forever because of your mistake. All I need is for you to answer my questions. What are you afraid of?
Letter to the Case Worker
You were assigned to us by the doctor to investigate our home for child abuse. You found no signs at all. I understand the steps you had to take to ensure the safety of our children. I understand the need to assign supervision until you could finish your investigation. But I will never understand why you thought you could talk to us the way you did. You are a professional doing an important job, you are not a person to make judgements or compare us to horrible people. I remember when we asked you to talk with our neighbors about how we are with our children, you said "It doesn't matter what neighbors say after all Jefferey Domer's neighbors didn't know what he was doing." Seriously, that was the right thing to say to us? You have also told me "some people sleep with serial killers without knowing it", when you were trying to make me turn on my fiance. What gives you the right to talk to someone that way? You were looking after the safety of my children and I also was hoping in some way you could help us, but by making those comments it made me not trust you. You kept saying no abuse was found in the home but you still had to go through with what the doctor said, it never made any sense to me. So a doctors ignorant opinion almost destroyed every thing we have, that is not fair. When the doctor said he made a mistake you called with the news like we should be so excited. How could I just forget the past months and jump for joy? It was the opposite for me. All the pain raced right passed the joy because I held it in for months. You should have never tried to keep a six month case on us, that really hurt me the most. No abuse but we still need to watch you. Is it just to keep a steady paycheck? As soon as my lawyer was brought into it, it was case closed no questions asked. Sounds pretty shady to me. I just want to say, please go back to school and learn some manners and really pay attention to how you should act as a professional, it might really make a difference when dealing with families in the future.
- Benign Enlargement of the Subarachnoid Spaces or BESS Syndrome, infant brain
This is a topic that is very hard for me to write about because it took a great toll on my family. I just want to give a little bit of history before I get started. My youngest son was born February 7, 2008....