‘He shook her violently and put her in the tub. There were bruises on her little body. He thought she was dead.’: Woman works to pass child abuse bill after granddaughter survives shaken baby syndrome

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“Miley was born on March 4, 2013 – a perfect and beautiful dark haired, healthy baby. She was an extremely happy baby and very seldom cried.

On Wednesday, October 16, 2013, in a matter of seconds our families lives changed forever – especially Miley’s. At approximately 2:10 p.m. I received a phone call at my work from my son-in-law who was caring for Miley and her sister Blakely. He said that Miley was choking and had stopped breathing. I dropped the phone and drove the few blocks to the house where I found him standing in the doorway holding a lifeless baby with Miley’s sister, who was under 2, standing next to her father. I thought Miley was dead.

I took Miley from him and asked him what happened. He said he had put Miley down for a nap and she had been crying. When he checked on her, she was not breathing. I asked him if he had called 911 and he said no, so I immediately dialed 911. It just so happened that I saw an EMT across the street so I yelled at her to come help me. She laid Miley in the back seat of my car and we could hear her gurgling so we knew she was still breathing. We waited for the ambulance to arrive. I noticed there was bruising on her chin and also a deep purple bruise inside her ear. I asked him how she had received the bruises and he said she had bumped her chin while playing in her jumper. I knew right away her father had hurt her really bad.

Miley was transported to a nearby hospital where it was determined she had a large brain bleed on the left side of her brain. Life flight was immediately called to transport Miley to Primary Children’s Hospital in Salt Lake City.

Baby in neck brace who suffers from shaken baby syndrome
Courtesy of JoAnn Otten

Once Miley arrived at Primary’s it was determined she had a very serious brain bleed on the whole side of her brain. There was also a smaller bleed on the right side of her brain which was 24 to 48 hours old. She also had multilayered retinal hemorrhages which is bleeding behind the eyes and bruising on her body and a hairline fracture on her leg. The doctors knew Miley had suffered from shaken baby syndrome.

We were told Miley had a 20 percent chance of survival.

Baby with shaken baby syndrome lying in hospital bed after procedures
Courtesy of JoAnn Otten

Miley’s brain injury was so severe she was not expected to survive that first night in the ICU. In fact, our family had said our last goodbyes to her that night. She could not open her eyes and when she finally did they were not able to move or focus on anything. She would stare at one spot and her eyes would not move. She did not want to be touched, nor could she tolerate any noise or light. Her little face was swollen. She had no control of her tongue and it just hung out her little mouth.

Miley was diagnosed with a hypoxic ischemic brain injury, which is caused by lack of oxygen to the brain for an undetermined amount of time. We don’t know how long she was without oxygen but it was long enough to cause extreme damage to her brain.

She had multilayered retinal hemorrhages which causes blindness and Miley was considered legally blind because of being shaken. She has cortical visual impairment which occurs from an injury or damage to the brain. We were told that Miley might be blind and that she had lost ¼ of her brain, which she would never regain. If this had happened to an adult they would be blind, crippled and severely mentally handicapped. Miley’s age was a benefit because she was young and hopefully other parts of her brain would pick up and develop areas that she had lost. We have seen this happen with Miley.

Miley was transferred to the trauma floor on October 17th. We had many doctors and nurses that were taking care of Miley – monitoring her and watching over her. On the 18th she begun to have major seizures and stopped breathing and a code blue was called. Again, we were faced with the fact that Miley might not survive – and again, we said our goodbyes to Miley that night.

Miley was taken back into the PICU where she was heavily sedated with multiple medications and placed on a ventilator. She continued to have seizures for 24 hours.

Close up of baby with shaken baby syndrome's face with bandages around her head and tube in her mouth
Courtesy of JoAnn Otten

An MRI was obtained which basically revealed there was brain bleed/blood flow restriction/oxygen depreciation/brain damage to the part of brain that controls sensory and motor. Basically, important networks within her brain were damaged and now all parts of the brain are not wired to function together.

At this time she was placed on a cold blanket hooked up to a machine that is similar to being placed in a tub of water with ice in it. This helped keep her temperature down and also helped preserve what brain function she had left. This was horrible. It was just like laying in a bathtub of ice – she was extremely cold and we could not place blankets placed on her.

The brain is a very complex organ. Every function our body has comes from the brain. Therefore when the brain is destroyed, a person loses their ability to use different parts of their body. Miley could not swallow without choking. We had to have a thickener, which is a gel that we placed in her milk to thicken it so she wouldn’t choke. Cortical vision is a complex part of vision loss, which the brain interprets, and it’s translated into visual images. It has been estimated to involve as much as 40 percent of the brain. When this process is disrupted, the visual systems of the brain do not consistently interpret or understand what the eyes see, and visual impairment is the result.

Miley was not able to drink enough fluids so a G-tube was placed in her stomach. This was removed after about a year and a half.

Miley will eat food but it has been a real process. Shaken Baby Syndrome children have a problem with the texture of food. There are many types of food that Miley won’t eat because she doesn’t like the texture. She also has this thing that she smells everything. It doesn’t matter if it is food, a toy, clothes or even people – she smells everything.

Young girl who had shaken baby syndrome holds up shirt and looks at G tube in her stomach
Courtesy of JoAnn Otten

Miley had to relearn to sit up, crawl, and she worked very hard with her therapists to learn to walk. She had braces that fit the lower part of her legs that helped straighten out her feet and no longer has to wear them. She had an eye patch that was placed on the right eye for short periods of time because she is crossed-eyed. This forces her to use her left eye. She will have surgery on her eye in the near future when we can get that eye to be a little more correct. She wore the patch under her glasses at school last year because for some reason she would do this without a problem but at home it was always a problem.

Older sister holding younger sister's hand who had shaken baby syndrome while they walk on sidewalk
Courtesy of JoAnn Otten

We have been advised that she should not play any type of contact sports such as softball, basketball, soccer, or gymnastics because if she by chance would fall or get hit in the head again it could totally destroy her brain or kill her.

Miley’s head has not shown any growth since she left the hospital in November of 2013, which means her brain, is not growing. Her neurologists have told us her brain will not grow anymore so her head will not either.

Miley worked with early intervention and had a physical therapist, speech therapist, occupational therapist, vision therapist and play therapist work with her to help her learn everyday skills that we take for granted. She now is in kindergarten and her mother takes her north for therapy once or twice a month. They help her learn to ride a trike and do everyday things a normal 5-year-old would not have a problem with.

Toddler who had shaken baby syndrome in therapy walking on balance beam
Courtesy of JoAnn Otten

Miley spent 18 days in the hospital for a totally unnecessary act of violence.

Miley’s biological father pled no contest and received a prison sentence of 1 to 15 years for child abuse. Miley received a life sentence. We attended a parole hearing on July 17, 2014, where he was denied parole and will not be eligible for another parole hearing until 2023 which he will then have spent 10 years in prison for, all for losing his cool with a crying baby. Miley will never get parole. He admitted he had shaken Miley very violently then put her in the bathtub, which we assume he did to try and revive her. He then shook her very violently again and then laid her in her bed. He said he squeezed her very tightly which left bruises on her little body. We don’t know how long he waited before he called me. We assume that he thought she was dead and needed to come up with some type of story to protect himself. That story ended up being that she had fallen off of the bed. He no longer has any parental rights to either of his children.

Education is the key to awareness and prevention. I thought about this statement many times and decided I needed to become a strong advocate for abused children and started fighting for them and being their voice.

After much soul searching I felt that Utah needed a Child Abuse Registry just like the sex offender’s registry. I contacted my state representative and asked him if he would help me to sponsor this type of bill.

Mother standing with two daughters beside state representative to instate child abuse registry
Courtesy of JoAnn Otten

After months of preparing Miley’s Bill, House Bill 149 – A Child Abuse Registry become real. This is when the hard work needed to be accomplished. There were many hours writing letters, contacting individuals and groups throughout the state for support of Miley’s Bill. I had amazing individuals throughout the state contact me with their own stories of abuse and how they supported House Bill 149 – Miley’s Bill.

It wasn’t easy and there were many days of frustration, but due to the persistence and hard work of Representative Derrin Owens, all this hard work paid off.

On March 9, 2016, Miley’s Bill became Miley’s Law – A child abuse registry for the State of Utah and should be up and running any day now. Our family was able to meet with the Governor of Utah for a special signing of Miley’s Law.

Young girl who was abused is accompanied by her family as they stand behind state representative signing bill
Courtesy of JoAnn Otten

Last year my grandson asked me, ‘What do you think Miley would have been like if she hadn’t been shaken?’ I have thought about this many, many times and I finally came to the conclusion that it doesn’t matter what Miley could have been – she is a wonderful, happy little girl who has progressed so much more than we thought possible. Through Miley’s injury she has helped so many other children and has brought child abuse awareness and prevention to our community. Miley is my hero!

Toddler who had shaken child syndrome smiling while sitting in chair outside
Courtesy of JoAnn Otten

I have not forgotten what happened to Miley – I have no tolerance for individuals who abuse children. I have seen families who have not supported the child but supported the perpetrator. I believe they will pay a price for their actions and suffer the consequences, maybe not now, but at some point in time.

Miley has beaten the odds and is a survivor. She has surpassed many obstacles we thought she would never be able to accomplish. But – she has many, many more to go.

Toddler with shaken child syndrome stands with older sister outside laughing
Courtesy of JoAnn Otten

We don’t know what the future will bring for Miley or how she will function with day-to-day living, but we will continue to fight for her. We hope that through our efforts we can continue to be advocates for abused children. Our ultimate goal is to stop the unnecessary and 100 percent preventable act of violence towards children.

If we can save one child from being abused and another from becoming the abuser, then our efforts are well worth our time.

Remember – One shake is all it takes.”

Mother sits on grace with her first born and younger daughter who had shaken child syndrome
Courtesy of JoAnn Otten

This story was submitted to Love What Matters by Miley’s grandmother, JoAnn Otten, of Utah. Submit your own story here, and subscribe to our best stories in our free newsletter here.

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‘It was at the hands of his babysitter, who was a family friend. Yes, we knew her.’: Mom ‘petrified’ after learning babysitter abused infant son, insists her shaken baby survivor will still ‘have the absolute best life’

‘Did you hurt my baby?!’ My ex replied, ‘No!’ I looked into my 3-month-old’s eyes. Blank stare.’: Mom ‘heartbroken’ after ex-husband’s abuse causes newborn Shaken Baby Syndrome, Cerebral Palsy, blindness

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