Falsely Accused Shaken Baby Syndrome - Families Bonded Through Similar Experiences - BESS

While I have been sitting here at home watching the madness unfold in the aftermath of the Casey Anthony trial I can not help but think what could have happened to my family a few years ago.

BESS


I will start out by letting you know that my son was diagnosed with Benign Enlargement of the Subarachnoid Space in June of 2009. BESS is caused when an infants head grows rapidly during the months after birth. As the head grows rapidly it causes extra space to develop inside the head between the brain and the skull. The veins located in this area become stretched placing the child at risk for subdural hematomas. A subdural hematoma is bleeding within the head. This bleeding can be caused with little or no trauma, meaning a bleed can happen out of the blue or a child can bump their head and have a bleed. Many children with BESS go undiagnosed because there are no major occurrences that need them to be checked medically and it is a condition in which the child will grow out of. It is not a lifelong condition, it is usually resolved by age three. For those of us who have had an accident that required medical attention it is a whole different terrorizing story.

Indicative to Shaken Baby Syndrome


I cringe every time I hear the words "Strongly indicative to Shaken Baby Syndrome", because for a few months that is all we were told. At ten months of age my son fell and banged his head on our carpeted living room floor and suffered a seizure. We called 911 and were transported by ambulance to a local hospital. A CT Scan was done and it show a bleed in his head. We were then transported by ambulance to a Children's Hospital about one hour away.

Upon our arrival at the Children's Hospital we were met by doctors and we were questioned over and over again. The began running numerous test on our son. They x-rayed his entire body, checked his eyes, and did another CT Scan. Through all this no one could answer our questions if he would be alright. We were just questioned and then left on our own. No information was given to us, his parents. It wasn't until the next day when he was admitted to the Children's floor of the hospital that we were bombed with their findings. I will never forget the doctors words "Your son has a subdural hematoma and he also has existing hematomas of different ages. He also has retinal bleeding. Your son has been being abused since he was about three months old. These injuries were caused by NON-accidental trauma and are strongly indicative to Shaken Baby Syndrome." I almost died with the sound of his words echoing past my ears. He had it all wrong, but how do you argue with the hospitals head "Child Abuse Expert"?

Child Protective Services were called and I hoped for them to help us. After all it is their job to determine if abuse is present inside the home. I was completely wrong. Even though there were no signs of abuse it didn't make any difference, if the doctor said it was abuse, then it was in fact abuse.

So there we stood suspected child abusers. It is a terrifying feeling and it is also hard when you are terrified for your child and what the doctors are missing because you know there was never any abuse!

Town Rumor Mills

As if the stress of our situation wasn't enough, we also had to deal with the rumors and glares thrown at us from others. Rumors grow like weeds, everyone and anyone had their stories and opinions of what kind of horrible people we must be. Some stories were so off the wall that I couldn't believe how another person could keep passing it them on. I just wanted to attack every person who was making us into these monsters when a lot of them didn't even know us. I hated to feel so angry but it is only human nature and I am human. It was very hard to compose myself when passing some of these individuals.

This went on for months and quite honestly we still get glares from people who honestly believe in their hearts that we abused our child. My anger towards them has mostly diminished and now I just feel sorry for them. It must take so much energy to constantly judge us.

What Could Have Been

If my son was not correctly diagnosed months later someone would be sitting behind bars right now. The case would have went to court and most likely ended in a Child Abuse conviction. An innocent person would have been sentenced to sit behind bars because a head "Child Abuse Expert" got it all wrong. How many innocent people are sitting behind bars for allegedly shaking their child? It makes me sick to wonder how many actually are.

Life Changes


The experience we endured made us better parents and stronger individuals. I am neither glad, nor sad to have gone through this experience. However, I am glad and thankful we survived and made it through. I learned a major lesson and it is not to be judgemental of others and to have faith in what you believe. Everything in life is not always what it may appear to be. It is not our job to pass judgements on others, nor is it any other person's personal mission in life.

I know longer believe in the "so-called experts" because in my opinion experts no longer exist. You may feel differently but if you were to walk in my shoes you may change your mind.

2008
2008
2011
2011

Friendships Form Through Tough Experiences


I first wrote about our experience in August last year, 2010. I wrote the hub with the hope of helping others facing our same experience. Almost one year later it happened. I received an email from a mother a few states away. As I sat in my chair reading her emotionally filled words all I could do was cry with her. I knew every emotion and every fear she had just by reading and feeling her words. After a few emails back and forth we began speaking on the phone. I felt as though me and her were the same person because everything she said was so similar to what I had said at that time. She to was being told her son was a victim of Shaken Baby Syndrome because of the same injuries. Like our son her son also had larger than normal head size. A doctor mentioned the possibility of BESS to her and she began her research. My hub appeared as her first search result and I became the person to help her through the journey. I am happy to say her nightmare ended quicker than mine and she is now spending every joyous minute with her family.

It is scary to know that others are facing this same situation. How many others are being falsely accused of Shaken Baby Syndrome.

Letter To My Friend


Melissa,

I just wanted to say that I am glad our paths have crossed. I never doubted your family. I knew from the first email how genuine and caring you are, and the first phone conversation confirmed my thoughts. I could feel your sadness and your fears. All I wanted to do was take those feeling away for you because I know first hand how crippling they can be. We made it!! As our lives appear to be normal again we both know that they are not. We struggle with more emotions than we ever knew could be possible. The joy of our families being back to "normal", the sadness that built up along with the fear, the anger for having to go through it all, and just the overwhelming feeling of all the emotions at once.

The days will get better as time passes but emotions are sneaky. They tend to lie quietly and appear again when we are least expecting them. But we are stronger from this experience in many ways. For myself I learned to not worry about what other people think of me and I learned to not judge others. I appreciate every day I have with my children and family and I am glad to have them in my life.

You and I were connected for a reason. You needed me, and in turn, I needed you. You helped me come to terms with some of my unresolved emotions, as I helped you through your current emotions. I am thankful to now know you. We were bonded together through our boys and it is a bond between two mothers that can not be broken!! I will always be just a phone call away!!

Jill

More by this Author


Comments 22 comments

Robin profile image

Robin 5 years ago from San Francisco

I think this is a parent's worse nightmare. Thank you for sharing and I'm glad your Hub was found by another mom in the same situation and gave her support and comfort. It sounds like you have a wonderful bond.


JillKostow profile image

JillKostow 5 years ago from Pennsylvania Author

Robin - words can not explain how glad I was when I received her first email. I made it my personal to mission to raise awareness and help others in this situation. That was my main goal with the first hub I wrote about it. It took almost a year, but it did happen. Thanks for reading and commenting. The more who read these hubs will help to raise the amount of knowledge about BESS in the world.


Melissa 5 years ago

Jill,

Thank you for making our family a part of your touching story. You are definitely one of the strongest people I know. You have been an inspiration to our family. Im so thankful I came across your story and that I had you to help me through the trying time. Im also glad I could help you in some way with any hudden emotions. Your family will always have a special place in our hearts. Im sorry your sons diagnosis took so long to find. From it though, we will be able to face anything. My entire family is glad I have been able to find you. Thank you for being an advocate. I'll always believe you were sent as our guardian angel


JillKostow profile image

JillKostow 5 years ago from Pennsylvania Author

Melissa

Thank you so much for allowing me and my family into your family's life. I truly believe we were put in contact with each other for a reason! I think about you and your family every day. I wished constantly for someone to talk to when we were going through this scary experience, someone to tell me that we would be ok and that I could make it through. My one wish was to be there for someone else and I am so glad it was you!! We will always be two mothers bonded together from our similar experiences and now lifelong friends!!


Brittamama profile image

Brittamama 5 years ago from internet space

Your story is amazing to me and I understand of being accused of child abuse. it is the most heartbreaking and damaging thing a parent can endure when they are not abusing their child. It isn't even close to the same but my son is failure to thrive and last week in so many words our doctor accused me of starving my son. two hours later a lactation consultant found out our son was so severly tongue tied that he can't swallow correctly and move milk front to back right. basically he couldn't eat right and was burning so many calories just to eat. It was a relief once we had an explanation. But it didn't take away my anger or my hurt. your story makes me feel like I am not alone in that sense.


JillKostow profile image

JillKostow 5 years ago from Pennsylvania Author

Brittamama - I am sorry to hear your experience but I am so happy you son is OK!!! I think if doctors took just a little bit more of their time to examine children the rate of mistaken child abuse would decline dramatically. I think most doctors are just jumping to abuse because it is easy to say. (not all doctors but most) People do abuse children, but I do believe a lot of the cases are not abuse cases. You are not alone, even though we have different experiences we still have the same emotions. Being suspected or accused of abuse is not easy to get past by any means. Best of Luck with your son, especially now that you have found the problem!!!


slaffery profile image

slaffery 5 years ago from Kansas, USA

I worked with a little guy who at 5 months had a head trauma. It was hard to know what happened. The dad admitted to giving him a bath and dropping him as the child was wiggling. This dad has a history of using marijuana but I just can't see him abusing his child. The little guy hit his head in two places which caused a brain bleed and also seizures. They were never formally charged but went through everything you described. It was a very complicated story and the parents have the child plus their older two children. Even though they went through the same things you did some good has come out of this. Thanks for sharing your story


kryysteez 4 years ago

Most shaken baby cases are caused by VACCINES. Doctors dont admit it and they do all they can to blame someone or something other than the TRUE cause. All you have to do is look at the vaccine package insert which states that brain hemorrhaging occurs. VACCINES cause MASSIVE problems for children and doctors everywhere blame other things because they know that the problems they cause keeps them in business.. "FIRST DO NO HARM" went out the window long ago, now its "HARM FIRST FIX LATER". pretty pathetic...


Meghan 4 years ago

Thank you so much for posting this! I just got a call from our doctor today saying that our daughter possibly has BESS. She had a head ultrasound done because her head is measuring in the 100 percentile. When I started to do reading on enlargment of the subarachnoid space I was getting scared about all the non-accidental trauma they were discussing. I would never abuse my child and I can't imagine being accused of it! I'm glad I will have this information if we have to cross that bridge. P.S. your sons head shape in the top picture looks just like my daughters head shape :)


Dr Nancy Kenyon profile image

Dr Nancy Kenyon 3 years ago from Orlando, FL

Dear Jill,

My heart goes out to you and your family for all the suffering you,ve experienced as a result of cruel, reckless, damaging misdiagnosis. I want to share with you how your courage and the insight to publish this Hub has impacted me, as I read it last night and have since experienced an awakening as to finding a path to healing my own personal struggles due to misdiagnosis. The reality of my loss is heightened by the knowing of the forever suffering of those who were dearest, family, friends, career, to me , now completely shielded from me. God alone led me thru death, awakening, struggling, to a new Faith that only those of us (you, Melissa ,and perhaps even more..the silent) can know and struggle to understand. We are warriors, survivors, and Yes..we must connect and march together awarding one another the ever longed for "validation" required for the freedom to even speak or share our experience. While a shiny badge is appropriate, we must carefully select those deserving of the unveiling of the champions we truly are. Rejoice my friend for I "see" you clearly and you bring me great joy !

THANKS! God bless You

Nancy


JillKostow profile image

JillKostow 3 years ago from Pennsylvania Author

Nancy, Thank you so much for sharing with me and also thank you for your encouraging words. I still struggle from time to time with the emotions from our experience, but by writing the hubs and then becoming connected with others who share my experience really helps. Although I would rather have no one else ever go through my same experience.


Sharkye11 profile image

Sharkye11 3 years ago from Oklahoma

This is a very powerful and very important hub. The world needs a reminder that sometimes they need to hold in their opinions until there is adequate evidence.

I didn't go through the same thing as you, but I was under suspicion after my baby girl fractured her arm. (she rolled off the bed...OVER the safety rail!) I get questioned about every bruise too, and honestly, they would just have to spend a day with her to realize how active she is. Kids get hurt, no matter how vigilant the parents are. Short of keeping children in padded cages, (which seems more like abuse) there is no way to prevent knocks, bruises, and a vast array of interesting owies. I am very sorry that you had to contend with such accusations, and hope that with time, people will see that they were wrong. Thanks for sharing your story, so that others won't feel alone.


moonlake profile image

moonlake 3 years ago from America

Thanks for sharing your story. I think this happens often doctors thinking parents are abusing when they are not. Voted up.


CraftytotheCore profile image

CraftytotheCore 3 years ago

Wow! This brings a powerful message on so many levels. It is true. Today, there are no experts. I think most so-called experts are really just spewing inaccurate information to get the case of their desk. Such was the case of my child as well. My son has Autism. At age 4, I was called in to a meeting at a private school where he attended pre-K. State workers, the classroom teacher (who was my cousin), the school nurse, and the school director all sat there smirking at me like they had just done some great heroic act. All because my son had a speech delay and they were concerned that I was the cause of it! I kid you not. The hell I went through for the past two years sounds very similar to yours. I dropped that school like a bad habit and shamed them through openly speaking about Autism. They refused to acknowledge that he had Autism...even going as far as prohibiting him from the pre-k graduation ceremony after he practiced for it in a cap and gown. They took my check them for payment for the month of June, and then after they cashed it told me they weren't going to let him graduate because I was a bad role model to others. Someone always wants to be a hero. They know nothing at all. They've never walked in your shoes.....just the fact that they have a mouth with a boasting tongue is all it takes for someone to ruin a person's life. Thank you for speaking openly about your experience! When we openly and honestly state truth, we prevail! I look forward to following you on HP.


lesliebyars profile image

lesliebyars 3 years ago from Alabama

I am so sorry that this happened to you and your family. As someone that I love has been falsely accused of something horrible, I know how quick people are to judge even when presented with all of the facts. Our society is quick to judge and very slow to forgive!! I voted your hub up and useful.


Danielle 2 years ago

Hi Jill,

Unfortunately what you have written about could have come from myself. My son has been diagnosed with BESS and we are still being falsely accused. I do not know where this ends and every emotion you describe we are going through at this instant and will forever be apart of our lives. I would love to connect with you if you are available.


JillKostow profile image

JillKostow 2 years ago from Pennsylvania Author

You can send me a friend request on facebook or email me.


Danielle 2 years ago

Great, where can I find your email address?


JillKostow profile image

JillKostow 2 years ago from Pennsylvania Author

Jillkostow@gmail.com


Michelle 16 months ago

My family is now facing this very same situation. My three month old grandson has the same exact symptons. His father, which is my son, was accused of child abuse because the doctors called it shaken baby syndrome. The doctors refuse to look at any other causes despite the mother's medical history, being on antibiotics at least 4 times during the preganancy and the symptons that have been present since birth. Child protective Services has already taken the kids from their parents, its been about a week and a half since they took both kids and they are actually trying to get the kids adopted even though the case has not been heard in court. My son actually went to jail and we had to bail him out to fight for his innocence and to try to find a doctor that would actually look at the child to see if there could be another explanation instead of shaken baby syndrome. It is a witch hunt with my son possible facing a prison sentence for something he did not do.


JillKostow profile image

JillKostow 16 months ago from Pennsylvania Author

Michelle find me on Facebook. Jill Kostowskie


Brittany Wallace 7 months ago

Everyone my mother and I took my son to the hospital because his pcp said he had fluid building up but we needed at CT scan to know for sure when the doctor came in she told us my son had a subdural hematoma and then came the kershaw county police and the d.s.s they EPC my 4 month old and my 15 month old they are currently in foster care Brantley had to have a shunt I am going to see him tomorrow my husband was charged with criminal conduct of a child because he told the ivestigator of an incident in which my son fell off the couch in his car seat and he yanked him up to make sure he was okay. Please help me my sons head was larger than normal we need help how do I go about getting a second opinion please somebody help me!!!

    Sign in or sign up and post using a HubPages Network account.

    0 of 8192 characters used
    Post Comment

    No HTML is allowed in comments, but URLs will be hyperlinked. Comments are not for promoting your articles or other sites.


    Click to Rate This Article
    working