What is Shaken Baby Syndrome?

Each year in the United States alone, medical treatment is sought for an estimated 1,400-1,600 babies who have been shaken. Don’t let your child become just another statistic! Tell everyone who cares for your child “Never shake a baby!”

Saturday, March 26, 2011

Riley, 4 years after being shaken

Little Miss Riley, a beautiful strong little girl with a smile that will light an entire room. She continues daily to battle the effects of Shaken Baby Syndrome. Our thoughts and prayers for continued strength in these trying times go to not only Riley, but her parents as well. Now on to her beautiful, amazing story of hope, faith and love.


My daughter was a healthy, happy, energetic, beautiful, social, and bright child. She was just over 2- years- old, and was hitting all of her milestones early. There were so many things Riley enjoyed doing- dancing, swimming, coloring, playing with her stickers and play doh (i.e. her “colors”) with daddy. Riley loved her “guys” (little figurines she carried everywhere with her) and her Disney shows and movies. Riley loved to look at books, and could tell me what every picture was. She loved playing with other kids. She had even learned counting in Spanish and some sign language. She loved being outdoors, going for walks, and going to the park to play on the swings and slides. Riley was honestly the model child, I couldn’t have asked for a more perfect little girl.

On March 27, 2007 our lives were changed forever at the hands of our day care provider, and family friend. The day started out as any other- we awoke in the morning, got ourselves ready, said our goodbyes, exchanged our kisses and “I love you’s” with Riley’s dad, and left on our way to the babysitter’s home. Before I left that day, I said goodbye and I love you to my little angel and gave her a kiss, as I always did. She was all smiles, in her new purple Gap velour sweatsuit holding on to her yellow sippee cup filled with milk, playing with one of her friends- I’ll never forget that vision, because I will never see my little girl in the same way again.

At about 12:20 PM, I received a phone call from our babysitter stating that something was wrong with my daughter, that she had been put down for a nap, and she wouldn’t wake up. My stomach dropped. I asked if she had called 9-1-1- she had not. I instructed her to do so and I immediately gathered my things and ran out of the building.

Riley was air lifted to Albany Medical Center that afternoon. It was in the ER that we learned Riley had suffered a traumatic brain injury- we were in shock. She was fine when we dropped her off. They informed us that she needed to be rushed into surgery to save her life, and we immediately gave permission to do so without another thought, anything to save our little girl.

The first of many miracles to come over the next year, Riley had made it through surgery- but she was not expected to survive much longer- her chances were slim. If she did survive, there was no way of knowing how she would be, but most likely, she would never be the same child again. The neurosurgeon explained the severity of her head injury and prepared us for the worst- we hoped for the best. We just wanted her to survive. Riley would be fighting for her life over the next few days.

We were living every parent’s worst nightmare. Riley was hooked up to a respirator, her little chest jerking up and down in an unnatural way. She had tubes coming out of her nose, mouth, chest and arms. She had bandages around her head where there were endless staples from her surgery- they had removed her left bone plate to allow her brain to swell, and they had shaved half of her hair off. There were monitors next to her bed that showed her heart rate, blood pressure, respiratory rates, and the amount of pressure in her head- the numbers appeared to be constantly changing. There were two poles behind her bed filled with medication delivery devices, at least 5 on each. She had two nurses assigned just to her, sitting right outside her door at all times, monitoring her care. Her little face was so swollen, her eyes were bruised and swelled shut and there was dried blood on her face. I couldn’t do anything other than stand there helplessly, hold her hand, pray and cry. We didn’t speak because the doctors said that she would try to hear us and it would strain her too much to try and focus on anything- they wanted her to rest. The room was dark and quiet except for the beeping of all those machines and the noise of the respirator.

During the next 3 months in the PICU, Riley defied the odds and was so strong, she endured more then any child should have to. Her heart stopped beating and she coded twice while I stood by and watched helplessly as doctors worked to revive my daughter- pumping her chest, injecting her with drugs, shocking her little heart. The second time in May of 2007, they had to put her back on the ventilator to help her breathe – at that time they also found a blood clot and spent over a week trying different drugs to regulate her heart rate and blood pressure. She faced surgeries to clean an infection from her brain, to replace her skull plate, to clean up her incision from the initial operation, to have a ventricle drain put in, to have a permanent shunt placed, to insert a feeding tube in her stomach (she had this surgery twice and went to the ER three times to have it corrected), she faced multiple infections in her blood and in her cranial fluid and spent over a month on antibiotics, she spiked high fevers, suffered morphine withdrawal (twice), had tremors so severe they prevented her from sleeping, she was also placed on methadone to help with drug withdrawal. I’ve lost count of the number of CT Scans, EEG’s, MRI’s and other medical procedures and tests Riley has had to suffer through. I stayed at the hospital with Riley the entire time, I couldn’t bring myself to leave her side, I was terrified that I was going to lose my daughter.

After leaving the PICU in June of 2007, Riley was finally transferred to a rehabilitation hospital. The first two weeks Riley didn’t do much other than cry both in and out of therapy. There was nothing we could do to soothe her. She was able to get some physical, occupational, speech and recreational therapy but it was very stressful and exhausting for everyone. She couldn’t eat any solid foods, and wouldn’t open her mouth for months. Riley was unable to hold her head up after so many months lying in bed and had no control of her neck or torso. She would drool all the time because she couldn’t swallow properly. She had a condition known as “drop foot” from lying down. Her hands also needed braces and were often stuck in a fist-like position. She would often “tone” which is when she would hold her whole body rigid and then cry. It was difficult to break her of this, and she still does it occasionally, even on medication to control it.

On top of all of Riley’s medical issues, my husband and I were considered suspects of this brutal crime, and were pulled from Riley’s bedside on countless occasions to be questioned and to make statements to police officers, social workers, attorneys, and Child Protective Service workers. We were forced to leave our daughter and endure reliving the most horrible experience of our lives over and over again, even on the stand at Grand Jury, Family Court, and finally, over a year later, at the Criminal Trial. Everything in our lives was put under a microscope- our parenting skills and style, our decisions, our family and friends, our pets, our love and care for our daughter. My husband and I eventually had to come to terms with the realization that our friend had in fact hurt our daughter. We’ve had to live with the guilt of leaving our daughter with someone we thought we trusted unconditionally, someone we loved, and someone we considered a friend. We went to trial in April 2008. Riley’s attacker was found guilty and sentenced to 18 years in state prison for the assault.

In over two years Riley hasn’t walked, fed herself, or sat up without assistance. She is finally able to say “hi” and “on”. She is legally blind and will face that challenge for the rest of her life. She must take seizure medication and muscle relaxers on a daily basis. She still cannot fully hold her head up for long periods of time, and she still needs to be held or be in a special chair or standing frame that holds her up. Riley is steadily making progress with her eating, and luckily the feeding tube is gone. We have purchased countless sets of braces for Riley’s legs, two special chairs for her to sit in, a special car seat, hand splints, endless medications, glasses and vision therapy. Riley has recently started potty training. She attends an integrated preschool program where she gets physical, occupational, speech, assistive technology and vision therapy. She has a one-on-one aide to assist her in every activity at pre-school. She still attends therapy at the hospital once per week to work on her walking, and is also enrolled in hippotherapy (horseback riding) and swim class. She has faced numerous dental appointments to correct oral issues sustained from months of breathing tubes and her tonic bite, by not allowing us to properly care for her teeth. Riley will have Botox treatments next month to help loosen some of her muscles.

Riley’s future is so uncertain, as is the nature of a traumatic brain injury. Every case is different. The brain controls everything, and the healing process is very slow. She faces years and years of continued therapy. My husband and I remain optimistic, because we love our daughter and refuse to believe that this is the way she will be forever. We want our daughter back. We will continue to provide Riley with everything she needs to work toward recovery, no matter what that entails. Every small accomplishment is huge for us. Her smile and laugh gets closer to the one we remember, a simple function that took Riley almost 8 months to gain back. We continue to hope. Riley has proven to be stronger then any other person I know, even at the age of 6. She is my inspiration. The doctors have prepared us for the worst case scenario- that Riley will stop improving, and that she will require assistance with everything for the remainder of her life. My husband and I realize that this may be Riley’s reality, but we choose to take each day as it comes, to be grateful that our daughter is still alive and with us, and to provide her with all of the love and support she deserves on this journey. We will deal with each issue as it comes and are still trying to pick up the pieces, focus on the future, and move on.

Friday, March 25, 2011

Jeremiah's Story

Jeremiah was born on December 21st, 1997. He was an amazing baby. Every parents dream. He was never sick, never spit up and never cried. He was always laughing and smiling. Things changed for us on June 7th 1999. We had a family friend from Arizona come stay with us for the summer. My husband and I lived in Phoenix when I got pregnant with Jeremiah and decided we needed to be close to family back in Oregon. This was going to be my mom and dads first grandchild and they wanted us back here too. On June 6th 1999, Jeremiah was diagnosed with croup. So I decided to not send him to the regular babysitter. The family friend said he would watch him for a few hours till Jeremiahs dad came home. I left the house at about 3:00 so I could clock in at 3:30 pm. Well, I started work and it was like any other day. Untill the phone at my register rang. The woman on the other end told me to pick up the other line, that I had a call. It was his regualr baby sitter, telling me that she was calling an ambulance because Jeremiah wasnt breathing right. I said ok. She asked him which hospital did I want him taken to. I said to St John's Hospital in Longview, WA since they were the ones that diagnosed him with croup the day before. I grabbed my till and went down to the counting room. Everyone down there told me not to worry about it and to just go. I walked out of the counting room and they handed me the phone again. It was the babysitter again. (not the family friend) She told me that they had just left with him and were taking him to Emanual Trauma Unit. Then I knew it was more serious. But I did not expect what I heard when i got there. When I arrived, I waslked past 2 Portland police officers. But this was a main hospital in Portland and the police were always there. I walked in and saw the family friend there trying to spell our last name. He was acting like he was there for a sliver or something. But when the police and a case worker came up and asked me if I was Jeremiahs mother, I knew something was very very wrong.
I started yelling that I wanted to see my son and they said I couldn't. That he was being prepped for brain surgery to save his life. I should have said something to the family friend then, because thats when he curled up in a ball and started crying. But I didnt care. I just wanted to know what was going on. I called my husband and he came as soon as he could. He arrived right after my mother did. We sat in this room for 5 hours hearing occasional updates on his surgery. During this time, the detectives from the St Helens police department were pulling Jason out (family friend) they pulled me out, and Jeremiahs father. After the surgery, they told us that he was in his ICU room and that we could see him. We walked into his room and I couldnt believe what I saw. I didnt recognize my own son. I stood frozen. There were tubes comming out fo his head, IVs in his arm, a breathing tube in his mouth, and bruises. So many bruises. On his cheeks, his ears, his throat, and both eyes were black and blue. They started going over the worst case senario. He suffered a stroke to his left side, so he may never walk again. He had blood in front and behind both retnias, so he could be blind. He could have CP and seizures for the rest of his life. That was if he ever woke up from the self induced coma they put him in, so his brain can rest and heal. BUT..they never said the words "Shaken Baby Syndrome" Not yet anyway. Jason sat at our house for 4 days, eating our food, watching our TV, using our phone, while we sat at our sons bedside, praying every second of every day that he would pull through this. 3 days later, after going to get something to eat, I went back up to Jeremiahs room and the head nurse told me there was a phone call from some one named Tina. This was Jason's aunt. I called her back and she told me that Jason's mom had had a heart attack and that they had a plane ticket waiiting for him at the airport to fly him home. I called the St Helens police dept and told them what was told to me. They said dont do anything . We will take care of this . 4 hours later , 2 of Jeremiahs ICU doctors, 2 nurses and a case walker, walked into his room. They closed the sliding glass door to his room and closed the curtain. While they are walking in, the phone is ringing, I answered it. It was the detectives. They told me that they had just arrested Jason. It was like some one took a 2x4 to the back of my legs and to my chest. I hit the floor, sobbing. Jeremiah's dad hugged me screaming what was wrong and I told him Jason did this. Mike started heading for the door, when the doctors stopped him and said "You need to be here for your son right now, but we want you to know, this is what we call Shaken Baby Syndrome." They kept it from us for 4 days, while Jason sat at our house. I was mad because the whole time they were protecting Jason from my husband. Now I can see why they did, but at the time I was furious they didnt tell us.
We were at the hospital for 6 1/2 weeks. In this time, Jeremiah got his vision back, and was able to talk again. There still was no movement on his left side though, but that never slowed him down. We were home for about a month before Jeremiah started dragging himself to the couch to teach himself to walk again. And he did. He didn't give up. Jeremiah is 13 now and as tall as I am. When he was 5 he even played soccer. He doesn't have siezures. They did put a feeding tube in, but removed it 8 weeks later. By talking to him, you would never know anything ever happened to him. But you can see the trauma of it all. 4 scars on his head. His left arm is bent and his wrist hangs limp. He walks with a limp on his left side, but the wonderful doctors at Shriners are working on all that. They have already done one surgery to his arm and 2 to his leg. Funny, but when he finds out he has to have surgery again, he is ready for the video games to be brought to his bed. Since he's not upset by all of it, I can't be either. He keeps us all strong :) Jason was charged with 2nd degree assult and recieved 5 years 10 months. We didnt find out till court that Jeremiah was strangled right along with being shaken. He was also hit in the face and thrown to the floor. I am not sure who was looking out for my son, or who his guardian angel is, but I can't thank them enough. Sometimes life throws you in directions you cant control. Throws you in directions you hate. When I look into my sons eyes, I see his strength, his love, his compassion. And from that he teaches me. He is my super-hero.
Thank you for listening to his story . He thought that he was alone. That he was the only one that this had happened to. Untill we came across this website. Now he knows. God Bless each and every one of you and your families.
Mike , Dena , Jeremiah , Tyler

Wednesday, March 23, 2011

Gavin's Story

Gavin was born on October 14th, 2009 at 6:14 pm. He weighed 6 lbs 10 oz and was 19 inches long. He was perfect. He was a healthy beautiful baby boy. Gavin was a happy baby. He always ate well, sometimes more than you would think an infant that small could eat. He took naps throughout the day like any other baby and only woke up at night to eat and then fell back asleep fairly quickly afterwards. He hardly ever cried and when he did he sounded more like the Aflac duck, than a baby crying. He was almost always quickly comforted with a new bottle or his favorite orange binkie he had had from the day he was born. He was what most people would consider an easy baby. His smile could easily light up the entire room and having him fall asleep on your chest was the best part of any day.
On December 21, nine and a half weeks after Gavin was born, we all got a phone call that you never want to get. Gavin was being rushed to the hospital in an ambulance because he wasn’t breathing. Members of the Appomattox Rescue Squad responded to the 911 call and we were later told it was one of their quickest response times ever. They performed CPR at the scene and kept Gavin stable in their transport to Lynchburg General. After arriving at the hospital, we all sat in a small waiting room where seconds felt like hours. We were then told Gavin would need to be transferred to Roanoke Memorial. I never knew Roanoke was so far away. That drive took several days at least. After arriving at the hospital, we were taken into another waiting room and sat down with a leading doctor in the NICU. There are many events from this story that will forever be etched in my memory but those few moments listening to that doctor tell us what had happened to Gavin that day will always be in the forefront of my mind. She told us Gavin had bleeding on his brain that was caused by a traumatic brain injury. She also told us the retinas of his eyes were detached and there was blood pooled behind them as well. She went on to tell us that this brain injury had in no way been caused by any type of accident. It was only later that the term “Shaken Baby Syndrome” was used to describe what had been done to Gavin.
The next six weeks that Gavin spent in the NICU at Roanoke Memorial are somewhat of a blur.
The first several days were the most critical. Gavin had several bouts of seizures and for the most part, was completely unresponsive. He was on a ventilator that was doing most of his breathing for him and he was being fed through a tube in his nose. Walking into his room for the first time was extremely difficult; seeing him lying in that big bed, so tiny, hooked up to several different machines with tubes and wires coming from all parts of his body. It’s an image that I will never forget. However, with each passing day, we were given more and more hope. On the 23rd, Gavin opened his eyes and moved his arms and legs a little bit. By Christmas Eve, he was breathing more on his own. Gavin spent his very first Christmas where no child should, lying in a hospital bed fighting for his life.
On December 26th, another tragedy struck the family hard. Gavin’s uncle Cody was killed in a car accident. While it all seemed practically unbearable, I believe God needed an angel to watch over Gavin and he chose Cody to do just that. Just a couple days later when Gavin was being talked to about Cody, he smiled for the very first time since being in the hospital. I truly believe Cody talks to Gavin and will always watch over him. By the first of January, Gavin was moving his arms and legs a lot. We were told it was the nerve damage causing his movements but we were just so happy to see him active. However, it was around this time that the leading neurological doctor in the NICU told us what she believed the outcome for Gavin would be. She said it was very likely that because of his brain damage, Gavin would never be a normal child. He would not meet developmental milestones. He would probably never walk or talk. It was very possible he would be blind and deaf forever. And there was a chance he could be in a vegetative state for the rest of his life. This was the most devastating news you could ever be told about someone you love. What else could we really do but put our faith in God and pray that this would not become a reality.
On January 6th, Gavin had surgery to have a trache put in for him to be able to breathe on his own and a feeding tube put in his stomach for him to able to eat. At this point, Gavin had no gag reflex nor could he swallow properly so the trach was necessary so we could suction his airway for him to breathe. After this surgery, Gavin’s face was tube free and it was a beautiful sight to see. On January 14th, Gavin was moved out of the NICU and to Kluge Children’s Rehabilitation Center in Charlottesville. This was very exciting as it showed Gavin had improved enough to begin therapy. Within the month he spent at Kluge, Gavin showed improvements working with his speech, physical, and occupational therapists every day and we learned to celebrate the small successes. Around this time, the doctors at UVA re-examined Gavin’s MRI scans which showed that he had older brain injuries that occurred before December 21st. They told us that Gavin had been shaken on a total of three to five different occasions. Because of this information, the investigation of Gavin’s injuries is still on-going. On February 12th, Gavin was released from Kluge and came home to his foster parents, his great-aunt and uncle. Patricia and Floyd Wood are who I consider to be two of Gavin’s angels as they are now his adoptive parents and quite possibly the best thing to ever happen to Gavin.
As of today, Gavin is a lively and extremely happy 16 month old. He can see perfectly fine. He hears everything that goes on around him. He smiles constantly. He even laughs when something is funny and I mean belly laughs to the point where he can hardly catch his breath. Gavin still has his trach and feeding tube; however, there is talk of possibly removing his trach sometime this year. He also has a button to place over his trach so he is now able to make noises, which are pretty much some of the sweetest sounds I’ve ever heard. Gavin is able to roll over and has enough head control to be able to sit in a specialized chair by himself. He is being fitted for leg braces and a chair for him to be able to stand up and hopefully walk one day. He is doing everything in his power to prove that doctor in Roanoke completely wrong. Gavin is nothing short of a miracle. He is one of God’s miracles.
Gavin has been a blessing in my life. I know he was placed in my life for many different reasons but I strongly believe that the main reason was to show me how amazing and powerful God truly is. Gavin, a nine week old baby, brought me closer to God. He made me believe. He showed me the true meaning of faith. Even in the worst of situations, especially in the worst of situations, God is always there with you. He has a plan for your life. And He will never leave you. Throughout all of this, I have come to rely on the Bible verse of Jeremiah 29:11 “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” Because of this verse, I know God has a beautiful future planned for Gavin and for each one of us.
While I came here today to give this testimony to God, I also wanted to use this opportunity to educate you about Shaken Baby Syndrome. In America every year an estimated 1,200 - 1,400 children are shaken for whom treatment is sought. Of these tiny victims, 25 -30% die as a result of their injuries. The rest will have lifelong complications. Long-term consequences can include learning disabilities, physical disabilities, visual disabilities or blindness, hearing impairment, speech disabilities, Cerebral Palsy, seizures, behavior disorders, cognitive impairment, and even death. Often, perpetrators shake an infant or child out of frustration or anger. This most often occurs when the baby won't stop crying. I ask you today, please, if you ever get frustrated while holding a child, place them in a safe place and walk away. Take a few moments. Take some deep breaths. Do whatever you need to do to calm down before picking the child back up. It only takes a few seconds to permanently injure a child and change their life forever. It also only takes a few seconds to share this information with someone you know. Thank you for listening.


Saturday, March 12, 2011

Coming Home - By Steffany DeWitt

Families, Friends, and Supporters

I wanted to take this time to let you all know what is going on with me. As I am very happy and believe strongly in this network, I am taking the time to step back from the network for a while due to things that are coming up in my life right now. As some of you may not know, my husband Michael is currently deployed to Afghanistan and has been gone since March of 2010. I have not seen him but all of two weeks in the past year. Although, the network is very important to me, I have decided to step back and take the time in welcoming home my husband and get our life back together as it was before. Michael and I were married in November of 2009, and were only able to spend 5 months together before he deployed. Before we were married, due to him being in the Army we were only physically together a week. Right now I believe I need to take the time and focus on my family. As the network is very important to me, my husband and son are the most important things in my life right now. I am very excited to finally get to welcome home my husband. I am not leaving the network permanently; I am just stepping away for some time.

Although a lot of work has been done and I have been grateful enough to help, I unfortunately will be unable to attend the candlelight vigil this year. I will miss meeting you all, but I will be there in spirit. I am so happy that I have been able to help out with funding this year to the vigil and hope to return soon so we can get working on next year’s vigil as well.

I want to thank all of you for opening your arms and hearts for letting me be apart of a wonderful family. We all have been there for each other through thick and thin and my return will be better than ever. Again, know I am not leaving forever, just stepping away to take time for my husband, our son and myself. I am very excited to see what our future brings and hope to return to the network better than ever.

Thank you everyone!!

Steffany DeWitt
Mother to Dominic DeWitt-SBS Survivor

Friday, March 11, 2011

Dreams of a Princess - Chance of a Lifetime!

Family and Friends,

As you all know, on February 19, 2011 my best friend and love of my life proposed to me. Through heartache, grief, loss, and the tragic death of my daughter Madilyne, I never knew my heart could love as it does today.

I moved to Little Rock from Florida in July 2009, after the great travel from FL to NYC to Arkansas, to journey on my life path to make a life from the dreams within my heart. After dedicating all of my heart, my time, and my effort into the Legacy presented by the beautiful life of Madilyne, I am thrilled to share this news with all of you concerning our engagement. An opportunity of a lifetime has presented itself to us, and wanted to ask for your help.

Jamie and I have entered this contest for a chance to win $100,000 for the wedding of our dreams with a celebrity wedding designer from Crate and Barrel! This is so exciting, but short notice, and will only take you 2 seconds to vote. Simply click the link below which will take you to our page on their website and click vote. One vote per person, and please pass along to all you know! We need at least 3000 votes in the next 20 days to be in the top 100 that will go to a judging panel and winner will be announced in June 2011!

This is very exciting as an opportunity to not just have the wedding of our dreams, but also have ALL of our friends and family in attendance as this will help with travel accommodations for those near and far!

Thank you for your vote and keep passing along, we don't usually ask for something as such but this would truly be such a blessing for not only us, but for the memories we hope to share with everyone in March 2012!

Here is the link - http://www.ultimateweddingcontest.com/entry/153006

Love you all!
Jamie and Rachel
Mother to Madilyne <3 SBS Victim Age 10 months