I would like to introduce you to Lily.
It started February 20th 2019. It had started like any other day we got up and our heathy families work came to the house we talked with him about SBS and all different kinds of things since I just started going back to work. It was my 3rd day back. I went to work around 5 and at about 10 I got a call from him saying that he called the Ambulance to check on Lily because she wasn’t acting right. I asked to speak with the EMT and they told me that it looked like she was overly tired and had a tummy ache I asked if I needed to come home and they said that he didn’t want her taken to the hospital and I completely trusted him. I got off and went straight home after work. I got home roughly around 1:45am I had my mom come in to check on her just Incase with me being a new parent I wasn’t sure that I could say if she was ok or not. We went inside and he said he had gotten her to sleep and didn’t want to wake her so I thought ok she’s finally asleep that’s good if she was really super sick she wouldn’t be asleep. But I was very mistaken. My mom went home and told me to call he if she woke up and I thought it was serious( she only lived up the street). I sat down trying to relax my mind racing on what she could have. Around 2:45 she woke up and I new it was bad I called my mom instantly and my sister rushed down. I couldn’t get lily to open her eyes and she kept screaming. My sister said she would take her to her house( my mom and sister lived together) and observe her for the night. Not even 10 mins later she called and we were on our way to the children’s hospital. Within the 10 mins lily and started vomiting and became lethargic. I was terrified thinking it was the flu since so many baby’s had been dying from it. We got to the hospital and waited for about 15 mins before we got in a room. The doctor came in and told me that we needed to get a CT scan he was almost positive she had SBS. When he said that I felt my whole world shift. I was sad and terrified and angry. Because he was the only person who could have done it. My mom decided to go back with her to CT while my sister took me outside so my daughter didn’t have to see me break down. I then received the first call from him asking me what was going on I asked him if she had fallen or if he had dropped her and he told me no. That made me even more angry because I knew he was hiding what he did and I knew he wasn’t going to tell me. I hung up and went back inside after a bit more calming down. They got the scan back and shahid she need to be moved to the PICU. We got up there and that’s when everything became so much worse she was starting to have seizures so they tried some meds and it calmed it down so they could do a EEG and they found out she wasn’t just having the external seizures she was also having internal seizures. At least 10 an hour. And they had also told me DCS had been contacted. At this point it was about 8 am and he had called but didn’t make the effort to come see her. At about 12 the DCS showed up with the police and his family was in the waiting room outside. I was taken into a room for interrogation when they found out my story checked out they asked where he was I told them he was at home and gave them his number. He had answered them and told them he was at the mall with his friends. They told him he needed to come in for questions and he tried to get out of it but eventually gave in and his friends brought him right over. They questioned him for 2 hours with no success but knew he was hiding something because his story kept changing. So they brought him in to see her he walked into the room and immediately went to hug me knowing he did this I didn’t even want to be in the room so I looked at the DCS worker and the cop and told them I had to go to the bathroom and to watch my daughter and I didn’t want him around her for to long. They said ok and I left the room I went to the bathroom and just sat on the floor and cried. I got up after about 10 mins and they had went back to the interrogation room I was happy I didn’t have to see him. After another hour he finally confessed that he got mad when she wouldn’t stop crying so the threw he in her bed. She started crying like crazing then stopped he said he had a bad feeling and called 911 and then he lied to the EMTs. We signed a protection order right then and went to court 2 days later. He was kicked out of my house and in May was arrested we are still waiting for our trial date. Hoping to get it this May. Lily has overcome most obstacles and is learning everyday we are hoping to learn if or what damage was caused to her brain in April.
I would like to introduce you to Bridget.
Meet Bridget (she’s another survivor sharing her story)
My name is Bridget, and I am a graduate student living in Boston. I’m going to try and make everything as simple as I can. With that, I must admit my case was pretty messed up from the start.
I was born in July of 1993 via a planned cesarean birth. The doctor indicated I had some fluid in my lungs. The doctor was able to suction everything out, and I was kept in observation for 24 hours. I tell you this because some of the fabricated stories I have been told suggested I could not breathe when I was first born, and a doctor banged my head on the table multiple times as some sort of resuscitation act. As a side note, I must point out the doctor is still practicing and I was released after a 24-hour observation period. I can definitely say if I was abused at birth my family would see to it the doctor would lose their license.
Once discharged, I lived with my biological parents for five weeks. During the fifth week, I had a tonic-clonic seizure. An ambulance was called, and I was rushed to the local hospital. My grandmother arrived at the hospital after receiving a call from my mother who said I had a seizure.
My grandmother started advocating for me right away. She knew the hospital was not equipped to handle complex pediatric cases, so she saw to it I was transferred to Albany Medical Center in New York. My family is from New York, but we were south of Albany. Thankfully a neurologist at Albany Medical Center agreed to take my case.
Once I arrived at Albany Medical Center, I know the neurologists immediately acquired MRI scans of my brain. They saw a total of six hemorrhages and a significant amount of cerebral spinal fluid. I know I was at Albany Medical Center for two weeks. During that time, I have no idea what happened. All I know is my grandmother practically lived in the library trying to learn all she could about traumatic brain injuries and abusive head trauma.
I was released from the hospital when I was seven weeks old. My diagnosis was AHT caused by shaken baby syndrome. AHT stands for abusive head trauma. The pediatric neurology attending on my case told my grandmother my prognosis was not good. His exact words to her were “take her home and love her because she will not be able to walk, talk, see, and she will be dependent on someone for the remainder of her life.”
As one can imagine, I was placed in foster care. I was lucky enough that I lived with my grandparents the whole time. My two older sisters and I were adopted when I was five. My sisters and I were raised by two of the most dedicated, compassionate, loving, and inspiring humans on the planet. I cannot provide enough words to express how absolutely amazing my grandparents are. We were taught such valuable lessons and had the best experiences growing up. I’m literally crying as I type this out. So, I’m going to move on.
When I came home from the hospital, my grandmother immediately pushed to get early intervention services. However, the duration and frequency of the services were not enough. My grandmother acquired a membership to the YMCA and received permission from a local hotel to use the pool to help with my spasticity. I had posttraumatic seizures for two years after the trauma. Thankfully I have been seizure-free since I was two and a half.
I have some long-term disabilities due to the trauma. I have cortical blindness, optic nerve atrophy, hemianopsia, nystagmus, and photophobia. I had corrective surgery for amblyopia and strabismus when I was quite young. While my eyes are healthy with retinas intact, I had a hemorrhage at my optic chiasm resulting in almost total blindness.
It’s really hard to describe the vision I have. I can see light in both eyes most of the time, but sometimes my right eye does not process it. My left eye is a little better. I have light projection meaning I can see where light is coming from, and I can see motion. I cannot see colors, but I can track movement. Sometimes I can see the shape of something, but I cannot tell what the exact object is. I have absolutely no peripheral vision or depth perception.
Another long-term effect of the SBS is spasticity. My spasticity primarily effects my right side. Recently, I experienced a flare that required intensive rehabilitation in an inpatient setting. I was a very active 26-year-old who could easily walk three miles each day, but after this flare I am currently trying to regain a proper gait and balance. Over time I am optimistic my endurance will improve.
You may be surprised to learn the most disabling condition I live with is not my spasticity or my blindness. Excluding this most recent flare of spasticity I had a method to work with my body. It functions quite well for me. Really, I am not disabled by my body. I am most disabled by others perceptions of my disabilities.
Honestly, the most disabling thing I live with is Migraine Disease. Life with intractable Migraine with aura is not easy to say the least. Transient aphasia, cutaneous allodynia, and hyper-responsiveness to sensory stimuli are some common symptoms I experience with and without the headache of an attack. The stigmas that surround my diagnosis of Migraine are difficult to debunk on a regular basis. However, I know it is important to raise awareness and find effective methods to work with the unpredictable and debilitating aspects of migraine.
I have been asked quite a few times if my TBI caused migraine. The answer is no. While a TBI can trigger more frequent and severe migraine attacks, migraine is not caused by a TBI. The exact cause of Migraine is unknown, but we do know there is a strong genetic link to the disease, and more importantly if an individual has migraine, the TBI compounds the issue, but it doesn’t cause it.
I also have occipital neuralgia which we believe is due to the trauma. The occipital nerves run from the base of the skull up across the top and the side of the head. When an individual experiences nerve pain from the occipital nerves they commonly experience a brief, sharp shooting pain starting at the base of the skull that moves across the top or side of the head.
Okay, so what about school? Quite honestly, I have always loved to learn, but I could not read or write on grade level until I was in ninth grade. When I was in third grade, the district teacher of the visually impaired (TVI) told my grandmother I had a learning disability, and I would never learn to read.
My grandmother did not accept the feedback from the district TVI. She believed I could learn, so She pushed for me to learn braille. It took two years for me to receive daily braille instruction. While I was resistant to it at first, I ended up becoming fluent. I now use braille in my day to day life.
There were so many things that happened during my time in K-12. I won’t get into it right now. All I can say is it was one hell of a battle. I advocated alongside my grandmother by the time I was 14 because I wanted to graduate and attend college. When I was in 9th grade, my grandmother got into a major argument with several of the staff because they said I wouldn’t make it passed 9th grade. They said I wouldn’t pass the New York State Regents exams. My grandmother was told I would be receiving a certificate of attendance. Of course, she wouldn’t stand for it so she transferred me from my local public school to a school for the blind. I did very well at a different school. In fact, during my senior year, I was able to do an independent study alongside my peers in public school because I was excelling at the school for the blind in the areas of English and history.
While in undergrad, I majored in adolescent education and English Language Arts. Once that was done, I attempted to receive a master of science in special education. I must say, it is horrifying to see the number of barriers in a field designed to work with individuals with disabilities. I almost completed my degree in special education, but the sleep deprivation and lack of access were just not worth it. I had a professor who refused to accommodate me. He would frequently say, “just be resilient Bridget.” I can say from experience, resilience does not turn a bell chart into a tactile graphic with braille labels. It doesn’t make the PDF scanned as an image recognizable with OCR software.
I had a unique skillset that helped me break through many of the access barriers during my time in graduate school the first time around. Those interventions came at a cost. At that point in my life I was sacrificing many meals and hours of sleep to try and find ways to work through without accommodations. I scanned my own textbooks. I created my own tactile graphics. For the times when the content was to cumbersome, to visual, or I just couldn’t freeze time to get it all prepped my grandmother did her absolute best to read and describe my work to me. It was hell for everyone in my family.
Sorry, I went on a rant there. What came next… I took about nine months off. During that time, I traveled to Boston with no clue what I was looking for. I found a graduate program at UMass Boston. I took a chance and applied. Seven months later I was accepted and that’s where I have been ever since. I am currently finishing up my M.Ed in Vision Rehabilitation Therapy, and I am in my second semester of a M.Ed program in assistive technology. Yes, I really love to learn.
In my free time, I can be found writing, advocating for improved awareness and targeted treatments for Migraine, reading, or folding origami.
Thank you for reading.
Please feel free to e-mail me at email@example.com if you wish to connect.
I would like to introduce you to Alissah.
This is my daughter Alissah shes a survivor. This little girl is my miracle child. In 2009 over a 6 week period of time starting at the age of 6 weeks old her father severely abused her while i worked. One night in November 2009 i called rescue when she was about 12 weeks old because she had stopped breathing. There at the hospital i found out my little 3 month old baby had almost every bone in her body broken. 32 to be exact. many of them in different healing stages. Both her legs, almost every single rib, her arms, ankles and feet. I was also told she had been shaken more than once and mostly likely squeezed. She was transferred to Mass General hospital in Boston, where the doctors told me it was amazing that she survived, we stayed there for 8 days. She is 3 years old today and like I said my little miracle. She has no physical of mental issues thank God. But the emotional problems she has now from this and will face in the future are extensive. from night terrors to anger problems and behavior stuff as well. She’s an extremely smart girl with a difficult but bright future ahead of her. I am blessed to have her and thank God everyday for keeping her here with me. As for her father he pleaded guilty in 2010 to aggravated assault on a child with injury. He was sentenced to 2 1/2 years in the correctional facility with 1 year to serve. He served 6 months and was released due to time served credit earlier in the year for violating my restraining order. He has probation for the next 4 years. Even after pleading guilty, he still denies any involvement to this day and has not taken responsibility for what happened to her. I feel like he got away with it. Definitely not my ideal outcome….but I have my daughter and I’m thankful for that. There is so much more to this story our local news paper The Cape Cod Times has written a few articles about this. I’m hoping by sharing our story people understand how serious it is to shake a baby and its okay to put the baby in a safe spot and collect yourself if you get frustrated. Every day I wish he just called me at work and said I’m frustrated please come home and help me. I will never understand why that is so hard for people to ask for help. I’m glad you started this page to show more awareness and hopefully by all of us sharing our stories more people will start asking for help and other families wont have to go through this heartbreak.
It’s been 10 years since I found out Alissah had been being abused by her father while I worked. 10 years since DCF ripped her away from me because of the extent of her injuries. 10 years since my worker told me this was the worst case of child abuse she had EVER seen. 10 years since my entire life came crashing down with one phone call. But it’s also been 10 years of healing, learning to be the best mom I can be and raise my children the best I can. Alissah is a typical preteen in the 5th grade. She’s developing and hitting all milestones at the rate any other kid her age should. And we are so grateful. Going from doctors telling me they don’t know how she survived the abuse she endured to seeing her growing into a beautiful smart loving girl, there’s no words. Just thankful. She has her “stuff” like everyone else does. Her doctors believe now that she’s older the long term side affects for her are mostly behavioral, and there’s really no way to tell if she would have had these issues if she hadn’t been shaken. She also does well in school. She’s had consistent therapy her entire life. Since she was 15 months old. All different kinds to support her in every way. I focus a lot on moving forward and healing. What happened to her is always in the back of my mind I still think about it, but I refuse to let it define her. She’s a kid that will change the world. She cares about recycling, saving the rainforests, animals and last but not lease she’s passionate about kids having rights and voicing her opinion whenever she feels like she needs to. She’s strong and I’m always going to support that part of her. I hope Alissah’s update will show other parents like me and even other kids that have gone through this, that there is hope, healing can happen, and you aren’t what happened to you.
I would like to introduce you to Colton.
My name is Mia. This is my son, Colton and I’s story. We are from Louisiana and connected with someone through the Facebook page on how to share our story. The middle photo is four days after his incident in 2015. The photo is from the same day he came home from the hospital. The photo of him and I is from the Fall of 2019. The first photo is when he received the Student of the Month Award for March of 2020.
Presentation (3 stages) Stage 1: In April of 2014 my son’s father and I discovered we would both be expecting our first child. We were so excited to become parents. His father was there all through the pregnancy from coming see ultrasounds, feeling the baby move, and preparing his bedroom. November 14, 2014 our family became complete when our son was born. Me and his father were the happiest we ever been in our lives. As a new mom I had a great support system. His father was always willing to help whether it was to feed, change diapers, or put him to sleep. He always wanted to spend quality time with our son every chance he could. He worked many hours so he could provide for us. His father was going through difficult times in his life at the time but he always put his sons care and needs first. Stage 2: In March 2015 our lives changed when I received a phone call from his father saying he wasn’t acting normal to go back to his home. I dialed 911 on the way to his home. When I arrived his father was holding him. Our son was breathing very abnormal and his eyes were almost completely shut. I listened well to the person on the line describing these symptoms he was having. She told me to start irritating him so I tickled him under his arms and he began to cry. She said if I could get a cry it was a good sign. The ambulance arrived about a minute after I arrived. Me and his father rode in the ambulance with our son to the hospital. His father was very nervous, scared, and concerned. Our son cried some of the way to the hospital but he was starting to calm down. Before we could walk into the hospital the sheriff’s department stopped him for questioning. The first test was a CT scan. His father carried him while I was walking beside them. All of a sudden our son didn’t move and got lethargic. A few seconds later he was back to his normal self. After the test we went back in a room waiting for results. His father and my father left to get some clothes preparing to stay in the hospital. The doctor came in with results while they were gone and the doctor told us it wasn’t good news. He said it looks like there is a bleed to the brain. The doctors and sheriff’s department believed he did something because of the story he told was not adding up with the sheriff’s department. The doctor then told me and my mom he was not allowed back into the ER. My mom then called my father to ask if they were back at the hospital. He said yes but my mom told him not to tell our sons father it was her on the line to follow what she would say so he could come meet us without him knowing. He came to meet us and we then explained what happened while he was gone. My son’s father was still sitting in the waiting room. During this time his father had no idea what was about to happen. Our son was being transferred to another hospital for more answers. I had to stay behind due to the police wanting to question me so my mom left with my son. The police came to question me about how long I left him with his father. I estimated about 2 and a half to 3 hours. Describing everywhere I had gone. My timeline matched from the phone records. His father was still waiting. The police moved his father out the waiting room so he wouldn’t see me leaving. They questioned him in another room and I left to go meet my son at the other hospital. The father was brought home that evening. When I arrived at the other hospital the first test was a MRI to the brain. Child protection services also arrived for questioning. His father called and text me asking how he was. I could tell by his voice in the voicemail he left he was worrying and sad but nervous. He text me saying he wouldn’t do anything to hurt our child. Something was not adding up right so I told him to let me be. We didn’t get results until the following day. It showed a definite bleed to the brain. Those first 24 hours all my son did was sleep most of the time and was not eating. He also text me the same day as the second results and I told him he was fine. That was the last message I sent him. The following day after the MRI results a eye exam was being done. His eyes were being dilated to see if he had bleeding on the retina (eye muscle). He did have bleeding on the retina. It was devastating news for us. The eye exam is what confirmed as shaken baby syndrome. That afternoon the nurse fought with my son to feed him. He did not want to eat. After 30 min he finally took a bottle and was awake and alert for the first time in 48 hours. The following morning the doctors thought he was doing very well and recovering quickly. He was awake most of the evening before so they let us go home 3 days after the incident due to him recovering so quickly. He wasn’t back to normal completely. The doctors said to keep a eye out for signs and if we had any trouble to return to the hospital. We never had to go back to the hospital. We had several follow up appointments after. Our first follow up was with the neurosurgeon one month later. She wanted a MRI done to the brain due to him having subdural bleeding. The bleeding hadn’t absorbed at the time but the doctor was not concerned. She didn’t see any excessive growth to the head and he was interactive, well developed, and well nourished. Muscle tone and strength very well. She thought he could hear very well and was very responsive to sounds and light. She wanted to repeat another MRI in two months due to the blood still being there. She didn’t notice any change in him. He was very responsive and growing normal but the blood still didn’t absorb. We went back 6 months later to do another MRI and the bleeding was gone. Neurosurgeon believed he was doing extremely well and released him but if we had problems to call the office to schedule a appointment. We also had many follow up appointments with the ophthalmologist. One month following our release from the hospital the doctor wanted to dilate his eyes again. He was tracking well with his eyes but I did begin to notice some crossing and drifting. His eye doctor referred us to a retinal specialist due to the blood still sitting on the eye. 2 months later following the first eye follow up we went to see the retinal specialist. Some blood had absorbed but some blood was still in the eye. We went back to the specialist a month later and the blood was almost completely gone. Around that time I started noticing more often his eye drifting outward. I called to go back to the eye doctor sooner because I was starting to become concerned. His eye was weakening due to the blood taking so long to absorb so I had to start patching the eye so it can gain strength. I first started patching the eye 7 days a week for two hours a day. I didn’t start patching until about 4 months after the incident before we started noticing the eye going out of control. 4 months later another follow up. His eye was slowly gaining strength back. The patching dropped to 3 days a week for two hours a day. I am still patching the eye today. We see the doctor from every 3 to 4 months. Stage 3: The same day our son was released from the hospital his Father was arrested. He was charged with second degree cruelty to a juvenile. One week later he was bonded out from jail. When he was released he had to sign a document stating he could not be anywhere near the victim or contact me for any reason until after everything was settled in trial. We both moved on living our normal lives in the same town. We both had jobs and if we would see each other somewhere in public we would avoid each other. In March of 2017 a friend of his father contacted me saying he was trying to get in contact with me. His attorney told him he could. I didn’t feel comfortable because I wasn’t sure if the statement was true or not and wanted to follow the rules. He wanted to talk about a agreement with paying child support. I told his friend to tell him if he needed to talk with me about any agreements that his attorney would need to call me. A few weeks later I received a phone call from his attorney. He was about to go through the process of jury selection and docket pleas. It’s when the judge makes a decision on if he will serve time in jail or be put on probation. The attorney and judge wanted to know how I felt about what should happen. I told the attorney on the phone to see what my child has gone through he should serve his time. If he would be put on probation I would not want him to contact me for any reason. Part of his probation would be to not contact me or see his child for 5 years. The attorney and his Father wanted me to agree on probation so he could get a better job to pay seechild support. I didn’t expect him to ever pay child support but ultimately it was the judges decision on what would happen. While on the phone with his attorney I talked about signing over parental rights. He really didn’t want so I wasn’t pushing the issue because it would be a long process. If I would have fought hard He would sign his rights over just to make me happy. This situation occurred at the end of March of 2017. The attorney met with the judge to talk about the situation but weren’t meeting again until June of 2017 to make a decision if he would serve time or be on probation. On June 3, 2017 I received a message from his friend asking about what happened to him. I didn’t know what was happening. I figured it was something about the trial since they were all meeting again in June. Usually I would receive a phone call right away if his status would change. Before I could respond back to his friend asking I got the news that he had passed away. He was found the evening before. He lost his life to suicide. Situations like this can take a toll on someone’s life. Always remember suicide is never the answer. You have a bright future ahead always. The miracle of this story is my son is alive and well. He started Pre-K this year and has no development delays mentally or physically. He received Student of the Week the first week of the school year. He also received Student of the Month for March. I am involved locally on a children’s advisory committee to bring light to these important
subjects. My message to parents who experience this life situation is there is HOPE.