first grade, but three. School through high school was rough for him, but he now has a community job at one school. He asked for a job, brought his résumé and they found a place for him. He now works ten hours a week and it has been a perfect job match. My son wants to drive but can’t, because he has a visual impairment and a seizure disorder.
My son has big dreams of getting a college degree but won’t be able to take collage classes, because he functions academically at a third grade level. He wants to get married, because he told me, “I don’t want to die alone.” I hope someday he can find that special someone. As I look back on what happened to my child, I realize all the hopes and dreams you had for your baby can be taken away in seconds at the hands of another person.
My son asked why he couldn’t see very well when he was around ten. I told him he was a survivor of SBS. He got angry and blamed me for going to work that day. It was one of many days that I cried. The guilt and anger have not gone away in twenty-two years. Everyone says you need to forgive, but that hasn’t happened yet and I don’t think it ever will.
One day he and my grandson were watching a television program. My grandson asked him why he had to sit so close to the TV. My son told him it was because a man shook him and then said, “When I get older we are going to find him, because he needs to pay.” That was another day I cried. I wish the court system felt the same way.
The person who hurt my baby did get six years in prison, but only after I gave my victim impact statement. They wanted to give him six months with time served. Someone from the state’s attorney office alerted the media to the plea bargain. I talked to the media about not being happy with the plea. Finally, the judge threw out the plea and he got six years. My son’s abuser got out of jail over fifteen years ago. My son got a life sentence—somehow that doesn’t seem right.
My son receives Supplemental Security Income and has home-based services where personal support workers assist him with being part of the community. He also goes to community college to take reading classes, because he still hopes he will get his reading level high enough to get that degree. I never discourage him from dreaming and always encourage him to advocate for himself. Life was forever changed on September 9, 1991, and it affected our whole family, but most of all it changed my son’s future. This is a journey I can only wish no one else ever has to take.
—Brenda Justi
GASTROINTESTINAL PROBLEMS
Children who are shaken are frequently left with oral motor dysfunction and hence are unable to chew or swallow. Damage from shaking causes poor oral coordination and functioning as controlled by the brain. A child may aspirate (or breathe in) food or liquid instead of swallowing, or may experience gastroesophageal reflux where food is regularly brought back up the gastroesophageal tract (from the stomach into the esophagus). This can cause severe irritation in the tract from the caustic effects of stomach acid and may lead to excessive weight loss in the child.
When a child has such problems with eating and processing foods, a gastrostomy tube (G-tube) may need to be placed directly into the stomach. One type of G-tube is the percutaneous gastrostomy (or PEG) tube. A needle is inserted into the stomach and the PEG is passed over the needle, all done under anesthesia.
Finally, children who have been shaken may have problems with processing food in their intestines and bowels. They may experience constipation. Changes in their diet, medications and laxatives (prescribed under a physician’s care) may help alleviate such problems. Registered dieticians are also invaluable resources.
Betrayal by a Loved One
I was dating my daughter’s father for two years. We were high school sweethearts. I moved into his family’s house for just one month. Chris proposed to me just nine days before my worst day ever. My daughter had just turned three months old and I left her with her father for my first day in Nursing Assisting Class. He was alone with her for ten minutes, so that his mother could run to the store. By the time I got home, she was already on her way to the hospital. She was not breathing for five minutes before Chris started CPR.
Chris waited until the cops showed up in the ICU the day after her injury to confess to abusing her. Since I had a runaway record back when I was sixteen, Child Protective Services [CPS] came in and questioned my mom to find out what might have happened. Both Chris and I were nineteen at the time. Two plainclothes cops came in and questioned me for three hours and then took Chris and questioned him. When he finally confessed, I was in tears and he was escorted from the hospital. Then I was asked by CPS to obtain a non-contact order, keeping him away from me and my baby. He was formally arrested on February 24, 2000, and they released my daughter from the hospital. When it finally came time for court, he pled not guilty to first-degree assault on a child, which carried a sentence of ten plus years. He pled guilty to second-degree assault on a child and got sentenced to forty-six months. He was released after just twenty-six months for good behavior. The only thing that is required of him is to stay away from us.
As you can imagine, there was a major effect on the family. I can only work part-time, due to all the appointments that my girl has, the constant hospitalizations and her declining health.
My daughter turned fourteen this past October. She just had her twentieth surgery. She has had three brain surgeries, several G-J tubes inserted, two Baclofen pump changes, surgery on her teeth, tendon releases and many, many more. She is 100 percent total care, which means she can’t do anything for herself. She has a feeding tube and an intrathecal pump, which gives her medicine twenty-four hours a day. She wears diapers, gets nothing by mouth and has a mental age of three to six months of age. She will never walk, talk, go on a first date, get married or have children of her own.
Life today is a day-by-day struggle. Her health is slowly getting worse. We were granted a wish from the Make-A-Wish Foundation and she went to Walt Disney World this past May for her wish. We are unsure how long she will be with us, but we enjoy every minute with her. My daughter has the support of me, her younger sister, her younger brother, my boyfriend of almost five years, grandparents, aunts, uncles, several other family members and very close friends, including the local music scene in Washington State who totally fell in love with her.
—Shannon Stiles
HYDROCEPHALUS
One complication of traumatic brain injury is an excessive build-up of fluid in and around the ventricles of the cranial space. Cerebrospinal fluid (CSF) is constantly being produced and absorbed in the brain. If there is a problem with resorption, CSF backs up and causes brain, and subsequently head, enlargement.
Hydrocephalus is controlled through the use of a shunt, a small tube inserted into one of the ventricles of the brain. The opposite end of the shunt is placed in either the abdominal cavity or the jugular vein for drainage and resorption. Shunts may malfunction over time, becoming clogged, and then require replacement or repair. Shunts may also become infected. Eighty percent of infections, if they develop, will occur within six months of the shunt placement surgery. Persistent headaches, nausea and vomiting will be signs of problematic shunt functioning.
Another treatment for the build-up of CSF suggests a rerouting within the ventricular system by endoscopic third ventriculostomy. Such a procedure is much more invasive but the long-term success rate is high, especially in children over two years of age. Usually, infants will initially receive a shunt placement and then be offered endoscopic treatment later.
HYPERSENSITIVITY
Infants and children who have been shaken can be hypersensitive in various ways. Hypersensitivity to touch means that an infant cannot distinguish between types and degrees of touch and can withdraw in a self-regulatory fashion. Patient,