Shaken Baby Syndrome???

Shaken Baby Syndrome.. Prior to the tragic events that took my daughters life if someone where to mention Shaken Baby Syndrome I would have looked at them and said “What is that?? Who would ever Shake a Baby?? How could that thought ever cross someone’s mind??” I know that I am not the only parent that was caught off guard when we found out this happened to our child. Sadly I along with many others never heard of this horrible act until it happened to our children.
In the weeks following the loss of my daughter I decided that I wanted to look for others that have been affected by this. At the hospital I was told of Several different cases of Shaken Baby Syndrome.. Of course they never told me names though.. I knew that there were others out there that understood what I was going through. I knew that it was important for me to find someone that understood..
I have since come in contact with so many families that have also so sadly been affected by SBS. Angel families and Survivors and their families.. It has helped me in so many ways just being able to talk to others that have dealt with this. Sometimes knowing that I am not alone is all it took to bring just a little bit of comfort to my life. I am not going to lie and say that it was easy hearing about and meeting others whose children have been through this though. Every time I heard and continue to hear of these stories my heart breaks. I know that I need these people in my life though, and I know that its important to have the support. I have met people who were afraid to talk to me about what has happened in fear of causing more pain. I have learned that sharing my feelings to others about this experience has helped on more than one level of healing.
As the mother of a SBS Angel I have dealt with several different emotions when I have contact with survivors and their families. I am SO happy that these children have been able to defy the odds and continue along the road that life has planned for them. The smile I have is sincere, but the pain I have in my heart is never far behind. I cant help but look at these children and be happy for them and their families. I don’t wish the pain of losing a child on anyone. I just want to give them great big hugs.. Even though I am feeling this awful pain I know that their path is not an easy one either.
When I meet another family of an SBS angel I share their pain. I know that part of their heart is gone forever and there is nothing in this world that any of us can do or say that will ever get that back. Our lives have been changed Forever.. But we are forced carry on. Then I realize so have the lives of survivors and their families.
We are all on this journey together. We have all felt the pain that SBS causes. I understand that each of us have a different situation, but yet we all are intertwined. Together we can help one another… Angel families and survivors and their families a like. We are all in this together!!

-Mandy

We will never forget.

We would like to take today to reflect on the lives lost, the families left behind, and to thank those fighting for our freedom on a daily basis with such a tragedy that took place 9/11/01. Our Nation was changed forever 9/11/01, as we continue to show our American Flag raised high, and our hands clasped together. We are a Nation many long to live in, a Nation whom stands strong and together. God Bless all those whom lost their lives 9/11/01, the soldiers on the front line fighting for our freedom, and the surviving families of those who have passed.

From all of us
Shaken Baby Syndrome Support Network

Breathing, even when your air supply is minimal

My life had been turned upside down. Not only had my son barely survived, it was my ex husband that tried to kill my son. He was arrested the second day Kyle was in the hospital. After the shock wore off, in ways I wish I would have seen him. I wish I could have hurt him, hurt him like he did Kyle. The first week while Kyle was in a coma, was really when I was at my lowest and at my point of “not functioning”. My mom and dad took off of work, and stayed with me the whole time. I’m still not sure how I made it thru that first week. Mom and Dad pretty much helped me thru that first week. Insisting I try and drink fluid, and try to get at least some sort of food down, and to get some rest. God bless my parents, I don’t know what I would have done without them.

My mother is a very strong women. Very strong on the outside, but deep inside gooey. But when it comes to having to take care of things, she just does. This is one of many things I got from her. I had the first week where I was just a basket case, and then the day before Kyle was released, I was doing much better, and my mom broke down. I just “switched gears” into the caretaker role. And that is what you do as a mom. You just do!
Its hard to explain I suppose. I knew that when Kyle was ready to come home… I was it. I was his only parent now in my mind. The child abuser, would never NEVER get near him again.

Before Kyle was released from the hospital, I asked my parents to go back to my home, and pack everything we would need for me and Kyle for a few days. I couldn’t go back into that house, not yet. I didn’t ever want to go in there again. This was where Kyle was assaulted and nearly killed.

Kyle and I stayed with my parents after that for awhile. Without the love and support of my mother and father, I don’t know how well we would have been. It was 2 weeks before Kyle’s first Christmas that we came home. It was very very hard. I did cry a lot, I had nightmares every night. It was a couple of weeks before I could really keep good down and get sleep. I had to take medication to try and get some sleep from the doctor for awhile, the nightmares were horrible. I leaned on some friends and my family, and just did what I had to do to function.

My focus was on my son, and him getting better. We had lots of therapy, occupational, physical, and multiple therapy sessions at Mary Bridge Children’s Hospital.
I just had to tell myself… you cant break down, you have to stay strong for your little man, cause I am all he has. And I will love and protect him until the day I die. I was a loving, cuddling, kissy mommy… and I became 100% more from then on.

Even today… when times are tough, I tell myself that I have to stay strong for him. And Im still that loving, cuddling, kissy mommy, and he is 10 :)

-Tara

Addicted? Do I, or dont I? Coasting through the pain-

Addictions~
Somebody told me that the first bad habit I picked up would be the hardest to quit- I guess it was always in the back of my mind...
Fortunately I never dealt with substance abuse such as drugs and alcohol or most types of destructive behavior. Part of this was because I was still a soldier and was subject to random drug testing, but mostly because it took all the energy I had to drag myself to work everyday. Once I finally got home it took an act of Congress to drag me off my couch.
I know everyone deals with their grief differently. Possibly my military training and my strong support network helped me avoid some fo the most dangerous abuses.
My addiction was smoking cigarettes.. That was my comfort.. That's what eased the pain. I smoked prior to becoming pregnant with Nicolette but quit the day I learned I was pregnant. During those first days while Nicolette was at Children's Hospital I craved a cigarette and my addiction began..
Oh how I loved to smoke my cigarettes..They got me through the day and it would take at least a pack. Sometimes 2 get me through those sad times.
Thankfully when I got pregnant with my son I was able to kick this habit.. I had a reason to move past that. It's not always easy. In fact just a few weeks ago, as Nicolette's birthday neared, I craved cigarettes. I was able to resist,but the craving was there-tempting me with its ability to ease my pain.
I do feel blessed that I never experienced the major destructive behaviors after my loss. I totally understand how easy it would have been to numb my pain with drugs or alcohol or any other behaviors. I could never say somebody is wrong for any activity they participate in to ease their pain. I must say though that I do believe that With faith in God you can overcome Anything!! If God takes you to it, He'll get you through it..

-Mandy

Surviving the Odds, Composing the Pain

I don’t really remember much, those first few hours after my son was rushed to Mary Bridge Children’s Hospital. I rushed home from work, he was already in the ambulance. I drove like a maniac to the hospital.

Everything was a blur going on around me except for me wanted to be with my son. There was medical mumbo jumbo that I didn’t really understand, they were not giving me much information really. Everything the doctors said really was in one ear and out the other. I didn’t notice anyone in the room. Not the doctors, the ex, the detectives… nothing…. But my precious little boy with all these machines and wraps, and bandages. I didn’t know what all that meant. I kept go back to what they initially told me, he might have a concussion…. I’m still in this fog of “my god, a concussion?”

Here was my sweet little baby. In a huge hospital bed. He was covered head to toe. He was bandaged around his head with tons of tubes and wires coming out of his body. He had emergency brain surgery. Everything was really a blur. I could barely walk. I stumbled to my sons side, and all I could see where his closed little eyes. I was in a total state of shock. Looking back now, I don’t know how I was able to function.

When the ICU doctor told me that the ophthalmologist had just examined Kyle and confirmed he had retinal hemorrhaging.. And some other blah blah blah medical stuff. I had no clue what this meant. The head of the ICU, the doctor there then turned to me and said, someone intentionally did this to this boy. She lifted her hands up and motioned as she talked. Someone intentionally shook this baby ( as she had her hands like she was holding a baby and thrusted her arms back and forth violently ) I shrieked and covered up my mouth because I was going to throw up.. I got up and ran out of the room, into the waiting room and collapsed on the floor in hysterics.

I guess it was at this point that the doctors and nurses knew I had no involvement. My mom was holding me and the doctor came back out, very calm this time, apologetic and calmly told me about Shaken Baby Syndrome, the injuries that my son sustained, and that finding the retinal hemorrhages as well as the other injuries confirmed that my son was violently shaken.

I don’t remember much of that night.

I went into my sons room in the chair leaning over his bed. I watched constantly the ICP monitor that was inside of my sons brain, watching the number. It was vital that the numbers stayed under 100. The pressure in the brain would determine if he lived or died. I stared at that monitor almost all night. I wondered if I would ever look into my little boys little blue eyes. I wanted him to just open his eyes. I prayed over and over to God please let him live. I fell asleep in the chair next to my son leaning on his bed.

The next day after learning it was my then husband that did this… I was numb. I was in shock. I felt nothing…. Nothing. I was all alone at the hospital. Then the anger hit. It was just like a switch of a light. Anger. Rage. Disbelief. Sorrow. The social worker was there with me, and just grab hold of me in a tight hug. I began balling, screaming… why… why… why… I was cussing, screaming, crying, dry vomiting.

My son remained in a coma. I did not want to leave his side. I refused to go to my parents house 20 minutes from the hospital. I would not be away from him. If he opened his eyes, I would be there. The social worker made arrangements for my parents and I to stay in some housing right across the street from the ICU, they gave me a choice… either go home or go across the street with the guarantee that they would call us in the apartment if there were any changes. Reluctantly I went. I had not been able to really sleep or eat all week. I could barely keep anything down.

About a week after we were there, the ICP was lower and they said he seemed to be improving. I finally got to hold my son. They said he was stable enough for me to hold him. I had not been able to hold my son for a week.

I sat in the chair next to my son, and the nurse picked him up between all the cords and bandages. I was so happy. My son was in my arms. I could rub my finger over his little cheek. My dad was standing there with me. I held him for a few minutes and whispered to him. How much I loved him and wanted him to come back to me. I suddenly whispered to my dad who was standing next to me… Dad… something is not right. Dad.. Go get someone.. Dad… and then it started. My baby started seizing in my arms. My dad was still standing there. I started yelling and then the room was full with doctors and nurses and they took him from me and had us go in the hall. I started crying and hitting melt down. The ICU doctor came out a few minutes later. He reassured me that he was ok. It was very common with brain injury to have seizures. They had given him some medication to help control the seizures. But that he was ok… really he was ok.



After a week of being in a coma. My baby boy came back to me. I asked him to come back to me, and he did. I did not know it at the time, but I was one of the lucky ones that are blessed to have a child that lives through Shaken Baby Syndrome.

-Tara

Fathom the moments after tragedy strike..

Happy Labor Day to all! Hope your weekend has been safe and happy! Today marks the first day of blogging for us as Mandy is going to take the seat. I would like to say that in all of our blogs, it is sharing of our own experiences to help others. Thank you for your support!

-Rachel

Fathoming the moments after tragedy strike...


I distinctly remember when I found out that something was seriously wrong with Nicolette. After an awful afternoon of Nicolette not feeling well and not wanting to eat I took our little girl to the hospital. They immediately began doing blood work and did a CAT scan. I remember sitting back in the CAT scan room all alone with my little girl. We were at a small town hospital so there weren’t many people there. They left Nicolette and me alone for what seemed like forever while they completed the diagnostics on the CAT scan. When I saw my step-dad and the police in the emergency room waiting area I knew something was terribly wrong. My mom worked at this hospital and I knew all the nurses and the E.R. doctor on call that night and no one would tell me what was happening. Then finally the charge nurse came in and broke the news to me and told me about the bleeding in Nicolette’s brain and that they were transporting my baby to Children’s Hospital in Denver. The world began spinning in all directions … how, how could this have happened? I remember asking the E.R. doctor if she would be okay and he tried to reassure me but, he didn’t say she would be okay.

The next thing I knew the woman from the Department of Human Services began questioning me. Like all this wasn’t enough, here was this woman asking me if I hurt my baby. That’s when I realized that my ex-husband had done something – but I didn’t know what. I knew the police had him in another room questioning him … and I knew in my heart he was denying everything. I also knew I needed to remain calm with him, especially now, because I didn’t want him to run before we got to the bottom of this.

Nicolette was flown by flight for life to Children’s Hospital while we had to drive. I really don’t remember much of that drive, but I was later told that I was really losing it. I was apparently in shock and my family had to snap me back into reality by telling me I had to be strong for Nikki because she was going to need me once we got to the hospital.

After many horrifying hours of wondering how my baby girl was, what was going on with her, what caused this, as well as dealing with police investigators, I finally was able to see my baby girl. She was on life support and a lot of other machines. I didn’t cry … I was numb … but I went right to her side and held her helpless little hand. My entire focus was on her … I just wanted to be near her. I remember at one point my ex-husband was in the room and telling him if he did this to my baby he better go tell the investigators … that was the last thing I ever said to him. He left the room and confessed shortly after.

Nearly 24 hours after taking Nicolette to the ER, a detective sat me down alone and told me what my ex husband confessed to them. I just know that my heart stopped beating then. All I could do was cry while she just continued to go on and on telling me the all the horrible things he did to my little girl. That monster tortured my baby. I just wanted to kill him and I honestly think that if I was given the opportunity at that time to do it I would have. I asked the detective to ask my family to come in and tell my family what he did, because I couldn’t move. After she told them I remember asking my step dad to find him and kill him. Unfortunately the police escorted him out of the hospital while the detective was talking to us. I cried and cried and just could not believe what was happening. My family sat there with me in tears. Finally my mom said okay now we know let’s get back to Nikki.

My focus immediately became just making sure my little girl wasn’t in pain and that the hospital staff was doing everything they could to help her. I didn’t want to think about what this monster did to my little girl. All I cared about was getting her better. Even though it wasn’t easy to not think about it especially when I would see the news on and have to hear about it over and over. The media ate the story alive because he was an Iraq War Veteran.

I was on an emotional roller coaster. Every emotion that exists I felt …Hope, fear, faith, love, anger, hate, hurt, pain, comfort. My world just kept spinning out of control and I didnt have the power to stop it.

-Mandy

Meet Our Bloggers!

Welcome to the Official Blog of the Shaken Baby Syndrome Support Network! Here you will find an array of information including spotlights of SBS Organizations around the World, coping and healing mechanisms, Family Stories of their struggles walking through the tragedy of SBS, but most importantly a daily blog that we hope can help those suffering in their time of need.

The Shaken Baby Syndrome Support Network derives "For the families, By the families." We are a large groups of families hoping to better the lives of those whom have witness SBS. We welcome all of you to join us in this journey, and take part to ensure the much needed support is provided to those in need.

I would like to introduce our bloggers to you! There are currently 4 of us working to provide you with up to date information, and to befriend you!

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Hey there everybody~ I hope that this finds you all well. I am so excited to be able to begin writing this blog. I am also saddened by the circumstances that have brought us all here. I want to extend a Great Big Hug to each of you that have been affected in anyway by this horrible 100% preventable act. No child should ever have to go through this nor should any family have to either.

I would like to take this opportunity to introduce myself. So to begin my name is Mandy. I am a 23 year old mother of 2 beautiful children Nicolette Jo and Amden Nicholas. The wife of a good ole’ southern man named Dennis. I have the world’s best family and friends If I must say so myself. I love them with all of my heart. I am truly blessed to have such great people in my life. I have strong Christian beliefs and feel that if God brings us to it he will see us through it. God will never give us a cross heavier than we can carry. I realize that the cross may be dented and broken into a million pieces though. Currently I live in Georgia although I am originally from Colorado. Boy do I miss the snow. No one could have prepared me for that for that climate change. It seems as though whenever I do things in life I like to do it drastically and make them big. Another example of that would be when I traded in my pom poms for combat boots when I joined the Army after high school graduation. What an experience that was to say the least. I am a very big girlie girl and I like things my way. I am sure you can imagine how that worked out. I was a cook and that is something that I love to do so it really wasn’t that bad I guess. Plus the lessons I learned only made me a better and stronger person and the friends I made turned into family!!!

While I was in the Army my life changed in more ways than one. It was during this time that I was married to another soldier the man whom I thought was the man of my dreams (never could have imagined that he would be the monster in my nightmares.) Shortly after getting married I became pregnant and on August 23, 2006 I became the mother of a beautiful baby girl Nicolette Jo. There is no greater joy in life than looking into your child’s eyes and feeling that unconditional love. My life felt so complete.

That all changed on Friday October 13, 2006 when my now ex-husband hurt our little girl. Nicolette became an angel on October 17, 2006 when she was only 7 weeks old. I will never understand how someone can hurt a child much less take their life. My daughter is a Shaken Baby Syndrome Angel. There isn’t a day that goes by that my life isn’t affected by this horrible tragedy. Through time and healing I have taken positive steps in my life that have allowed me to move forward. I will never forget my little girl and I will always be thankful for our 7 beautiful weeks we had together. I will also never be able to forget what has happened.

I know that I would not be where I am at today if it wasn’t for the support from not only my family and friends but also from the SBS families. That’s why I am so excited that we now have this network. I look forward to sharing my story with you all, getting to know you, and growing as a family. It is my hopes that through doing this we can reach as many people as possible! The sky is the limit!!!



My name is Tara. I am 37, I was born and raised in Washington State. I am married with one son, one step-son and one step daughter. I work fulltime, and spend time with friends, family, and many hobbies and working to spread awareness of the dangers of Shaken Baby Syndrome.



My son Kyle is a survivor of Shaken Baby Syndrome. He was assaulted in 1999 at the age of 6 months old. The child abuser was convicted of two counts of assault, one count of felony assault and one count of misdemeaner assault in 2000. Kyle nearly died Dec 1, 1999, but luckily the wonderful doctors at Mary Bridge Childrens' Hospital in Tacoma Washington saved his life. Kyle had brain surgery to relieve the bleeding and pressure inside his skull. If Kyle would not have had brain surgery when he did, the surgeon said that he would have died within two hours.


Kyle is considered a "highly functioning survivor". He functions physically like other children. Kyle’s challenges he faces are developmental in nature. He is developmentally delayed in all areas. He is developmentally approximately 1-2 years behind in his development. We are hopeful for a full recovery. We may not know for years the long term affect this will cause him. He is a very bright young man, very good hearted and happy, even though he continues to face challenges, and struggles with social acceptance due to his differences.

I am very excited to be involved with the Shaken Baby Syndrome Support Network for many reasons. My desire to spread the word about SBS of course, but to also reach out and hopefully be of help and support to other families who unfortunately are on this journey with me. I truly believe that regardless of how hard anyone may try, no one can truly understand what you live thru on the SBS journey unless they are on the journey themselves. I had never heard of Shaken Baby Syndrome 10 years ago, until my son was assaulted. I had my wonderful family to help and support, as well as the law enforcement, however I had no one that “knew” what I was going thru and what my future held. I was a basket case, and some days barely functioned. I hope to bring some comfort and support to others, as well as lean on those as well when I need support.

A support network…. For families… By families!



Hello! Rachel here! I am the mother of Madilyne, I work full time, and enjoy the company of great family and friends.

The Shaken Baby Syndrome Support Network derives from the healing associated with meeting other families whom have suffered situations comparable to my own.

My daughter Madilyne became a victim of homicide (as stated on her death certificate) due to Shaken Baby Syndrome. The grief brought forth due to this tragedy is unspeakable. In 2006 I began speaking with other families with comparable situations and felt secure talking with them about the "real" feelings I was having, that society disregards often times.

I have a longing desire to make Madilyne's story be known to others, as well as all of the other stories of our surviving heroes and the victims whom have passed. As a mother to a victim of Shaken Baby Syndrome, it has formed my life, but not negatively. I seek to dwell on this Earth bringing positive energy to the forefront, and to focus on the blessings here today.

Each year I have worked to create the Annual SBS Candlelight Vigil. The organizing efforts have been overwhelming and the public support is amazing. It is a time for families to gather together, and truly open up about what we have gone through without judgment and hesitation. Each year it gets bigger and better, and it brings joy into my heart being able to raise enough funds to offer an airline ticket to a family member of a victim/survivor so they too can attend.

An aspiring photographer at heart, my journey with photography is to capture the memories for others that my heart knows I would have had with my own child. When a loved one passes it appears we can never have enough pictures of them, and my goal is to ensure others do not have to feel that way.

Looking forward to the future to see who we can help in their time of need, and the beautiful things to come!



Hi! My name is Angela, I am married, a full time nursing student, and a mother of 3 beautiful children! I enjoy photography and graphic design in my own time, but most importantly watching my children grow each and everyday.

3 years ago I started an awareness and education page for my cousin Michael, whom survived but later passed due to Shaken Baby Syndrome. It is a desire in my heart to go forth reaching out to families going through this tragedy, and working with families whom have survivors to help better their lives on a daily basis.

I have enjoyed making the banners for the children affected by SBS, making them for their families to display proudly, knowing that we are in this together, and never alone. I had the opportunity to attend the 3rd Annual Shaken Baby Syndrome Candlelight Vigil in Florida 2009 and it was an experience I will never forget. Meeting other families not only helped me personally with my understanding, but to better understand the emotions and feelings my Aunt has felt all these years. I do not want Micheal to be forgotten, and with the help of my Aunt, and this organization, we can work together to ensure all families get the help they need and seek.
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Starting next Monday, we will have daily blog posts! So we hope to see you back here soon!

~Support Bloggers~