Unspoken Thoughts

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.

Comments 13 comments

Laura 6 years ago

Jill, so sorry to hear your story, is so sad to see that people in America are becoming this way. I hope you forget about this horrible experience. I can say that I am not surprise by doctors acting this way since right now it seems to me they study medicine just to make a lot of money but not to help people ( of course not all of them there are still some good ones) and for social workers the same, they should sympathize a little bit instead of pretending being cops and judge without knowing all details. I hope you forget this horrible experience and I hope no other families have to go through something like this.

God bless


JillKostow profile image

JillKostow 6 years ago from Pennsylvania Author

Thanks Laura, You are right, there are alot of great doctors and then there are the doctors who are in it for the money and not the care of patients and families. As for social workers, I can't speak about each one personally, but for mine and our local agency I do not have nothing nice to say. I was not fond of the agency even before I was involved. They do act as if they are cops or CCIS investigators when we all know they are not. They have an important job to do that needs to be done accurately or they will be ruining lives of undeserving families. I also hope no one else ever has to experience what my family did and that is why I try to write about it. If it is out in the open someone else will know.


chspublish profile image

chspublish 6 years ago from Ireland

Jill, I'm so sorry to read you had such a horrible time, such an endurance of so many months of not knowing, of being accessed in the wrong. It must have been worse than a nightmare, so traumatic for you, to be so misunderstood as a good parent and for a doctor and caseworker to get it so wrong. You and your family were so brave and tolerant and I hope for you all you can eventually put it behind you.


JillKostow profile image

JillKostow 6 years ago from Pennsylvania Author

chspublish, It was worse than a nightmare and even though everything turned out OK is still feels like a nightmare. It is hard to put it behind us because I don't want anyone else to have to go through the same situation. I am sure in time we will all heal from this experience, but it is a slow process. Thank you for reading and commenting.


webnatin profile image

webnatin 6 years ago

Hope everything will be alright soon.


bettybarnesb profile image

bettybarnesb 5 years ago from Bartlett, TN

Be encouraged jill. I can tell you are a great mom. With children things will happen. It is a part of life. I know because I have 4 children and there have times when I wish I could take their pain when they hurt themselves. It will be okay. Stay encouraged.


JillKostow profile image

JillKostow 5 years ago from Pennsylvania Author

bettybarnesb--Thanks for reading!! I am a very positive person, but with this matter it was very hard. I knew in my heart what had happened, but when you have doctors against you trying to predict what happened and getting it all wrong it takes alot out of you to keep being and thinking positive. Everything is fine now, but it is just hard working through all the unresolved emotions and negative feelings!! In time I am sure I will find a way, but it does get a little easier each year. Also writing what I never got to say really helped alot!!!


Terri Meredith profile image

Terri Meredith 5 years ago from Pennsylvania

As I'm sure you know, there has been much work done to refute the opinion that SBS is even a real condition. I recently posted an article about some of the findings. As more and more of these cases of mistaken prosecution and in your case, persecution, are found, I believe we may see a public outcry for reparations. I hope you won't just stop with writing this hub. Do some research and find some groups which may help you to make your story more public. It would certainly help to put an end to the modern "witch hunts" being propagated against parents and caregivers. Good luck with your endeavors.


Dawn 5 years ago

I am sorry to read your story. I can relate. My son was diagnosed with BESS. He had a larger than normal head and we given the scare of our life. Never hear of BESS and there is not a lot of info out there on the web. He was born Dec 2008 and was released last Fall from the neuro. He does have a speech delay but thats not related to BESS> Good luck to you and your famiy, Dawn


JillKostow profile image

JillKostow 5 years ago from Pennsylvania Author

Thanks for commenting Dawn. I am trying to raise awareness with BESS but it is not easy, mostly due to the fact of not knowing many families with children who have it.


loneparentgiggles profile image

loneparentgiggles 5 years ago from GONE

Thankyou Jill, your hub was very moving, I can see you went through hell with this, it's quite sad that these days health care professionals only seem to be there to pick on parents and not look after the child who is injured. It's not quite on the same scale but my son had a bad nappy rash at one point, it was bleeding and he had holes in his bumcheeks, I did everything I could to try to get rid of it but it wasn't going. I didn't want to take him to the doctors in case they thought I never changed his nappy. Finally I had to give in, on the way to the doctors I remembered that the day he broke out in the rash was the day after he'd started antibiotics for an ear infection. I found from the doctor that was the cause. I also had PND, and for ages was too scared to tell my doctor. Those I can handle, but when it gets to the point where you can't put some sudocrem on your own sons privates without feeling guilty something is wrong. Recently my aunt has been pushing me to get a health visitor so I have some backup... I've dug my heels in, all it takes is for my son to fall and I'm going to be tortured with questions. Nanny State... Everyone 'protecting' the kids... nobody caring about the parents. x x x x x x My deepest sympathies.


Jennifer 4 years ago

I want to thank you for sharing your story. We just found out our 9 month old daughter has BESS and I am scared to death! Her head measurements are big and they go straight up instead of going along the growing Curve. My pedi suggested a CT scan to be on the safe side and sure enough the results where BESS. The Pedi knows very little and I am scheduling a appt with a Pediatric Neuroligist tomorrow at Cincinnati childrens hospital. I have so many questions and there is not alot of info out there..


JillKostow profile image

JillKostow 4 years ago from Pennsylvania Author

Jennifer

Thanks for commenting and sharing the information regarding you daughter. It is very scary when you are facing the unknown, but I you are not alone. Please feel free to contact me through the email link on my Profile page. I would be happy to answer any questions you might have.

Thanks again and best wishes for you and your family.

Jill

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