James Peinkofer

Losing Patience


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He was in rehab for three weeks when they decided he would recover best in a home environment. At his time of release from rehab:

       • He was beginning to crawl again.

       • He could barely use his right side, due to a stroke from the blood clot.

       • His eyes were not tracking properly due to retinal hemorrhages.

       • He was on seizure medications, although the only seizures occurred during the hospital stay.

       • He was eating thickened liquids.

       • The speech therapists taught us how to teach him to sign as he was not speaking except for a few basic words: Mama, Dada, etc.

       One memorable person from the hospital stay was a nurse named David. My partner’s mother called him “Negative Nancy” because he always gave us the worst possible outcome so that we didn’t get our hopes up. One afternoon he sat down in my son’s room with my husband and I and said, “Do you understand that 80 percent of marriages do not survive a tragedy like this? A special needs child can be a huge burden on a relationship.” I was feeling pretty crazy at that point so I laughed and said that we shouldn’t have any issues there, because we were not married. Neither David nor my son’s father found it to be very funny. We weren’t married at the time but after our son was released from rehab we got married on February 8, 2008. One night, probably two days into the ICU stay, my son’s pressure stats were very high. The resident on staff rushed him back to have a CT scan. When the doctor returned, he said it would be a miracle if he made it through the night. All I can remember is leaving the room, crying hysterically, and running to the chapel to pray. My husband has never been much into religion but he was right on my heels and I remember he just sat there silently with me as I cried and prayed for God to let us keep him.

       A huge ice storm hit the Tulsa area while he was in the hospital. Almost all of the surrounding areas were without power. My mother-in-law and two older children were staying in a motel down the road because the power was out at my house. My son was still on a ventilator and he was being cared for by a new nurse. She was very young, probably in her early twenties. The power started flickering. I asked her what would happen if the power went out and if there was a glitch in the backup generators. I was worried he wouldn’t be able to breathe. She was on top of it and she ran and got one of those handheld CPR bags and stayed by his side until the power stopped flickering.

       Amber confessed to the police officers that she became angry with my son for throwing a toy and hitting her child. That is what triggered the shaking. She confessed that she shook him upside down, which explained the bruises, and then threw water on his face to wake him up after he started seizing. This part makes my stomach turn. She had such disregard for my son that she called her sister over before she called me, and her sister called 911. My baby could have died because she was too worried about being caught. The District Attorney was pushing for fifty years in prison, because the doctors didn’t expect my son to make it. For the first week, the doctor said there was a fifty-fifty chance and if he did live he wouldn’t be the same child. His brain function might be severely limited. He might never walk, talk, etc. But he defied the odds. Though I feel this is totally wrong, the DA changed the plea deal to twenty years in prison. When Amber is released she will remain on probation for an additional twenty years. The DA wanted Amber to be in prison until she could no longer bear children. We attended every court hearing. At first she looked somber and scared. Then she turned defiant. For the last hearing a friend of mine made T-shirts with my son’s picture on the back and our titles, like Mom, Grandma and others. The judge acknowledged us during her sentencing and asked us if we agreed to the terms of the plea deal. It made us feel somewhat in control when things were so out of control.

       Immediate family has become very bonded. My husband, his mom, his sister and our three kids are very close. We have become extremely protective toward all three children. My twelve-year-old did not have her first away sleepover until a few months ago. My brother and I don’t speak. He sat with his wife’s family during the court proceedings. They vehemently defended her and said she didn’t do it even though she confessed and was taking a plea deal. He abandoned my niece and nephew. A Department of Human Services social worker wanted to place them in our care as foster parents. We were good with it until they told us we would have to take them to visit their mom and I fell apart. I just couldn’t do it. My boss was going to foster them. It would have been a great environment for them. But the Indian Nation stepped in and said Indian children had to be placed with an Indian family. They ended up with Amber’s parents. I will say my husband and I have our worst arguments over our son’s care: future therapies, teacher issues, social issues. It takes a strong couple to survive something as devastating as SBS. I’m lucky to have found a true soulmate and we lean on each other. My other children suffered immensely while my son was in rehab and after. I regret it so much that their needs were pushed to the back burner, but I was so focused on making my son normal. I was so naïve to what SBS really does to the brain. His aggressive nature and quick temperament make it hard for him to have a close relationship with his brother and sister. My oldest is fifteen and he can read between the lines and calm his brother down when he is on the verge of going out of control. He is older, so I think he has more patience than my daughter. At times my daughter gets frustrated with her brother’s behavior. I try to reinforce that, no matter what, after we are gone they only have each other and they will always have to watch out for him.

       My son is now seven. He has been diagnosed with ADHD and a speech disorder. He is weak on his right side and he wears an Ankle Foot Orthosis brace. He still has weekly therapies and we are always trying the latest medical interventions. He takes medicine to control the ADHD and it has significantly improved his behavior at school. He was placed in Special Ed because his behavior was out of control. Then we had a twelve-week neuro test completed that confirmed the ADHD and speech disorder. I don’t think he will ever be able to participate in a normal class, because there are too many children and it is sensory overload. Being in a support group helped me realize that it’s okay if he is not exactly like his peers. My friends who were there when the abuse occurred, who sat by us while we cried at the hospital, are incredibly loving toward him. When we make new friends with kids they don’t understand and just think he is a brat. They don’t comprehend the outbursts or the overstimulation. So it has made me intolerant and I would rather not make new friends than have my child criticized. I feel life today is wonderful, because he is here and we love him and are incredibly grateful God let us keep him with us. My husband’s mom is a godsend. She truly is an angel. She backs up our therapy decisions and takes him to his appointments while we work and he loves her so much. Someone asked me the other day if I thought my son could live a normal life and I said, “Yes, with lots of hard work.” My brother was incredibly supportive. He is a marine and was stationed in Broken Arrow when the abuse occurred. He was married with two children but still found time to visit and help with whatever we needed. He lives in Japan now with his family, but he is the only one of my siblings with whom I still communicate since my son was abused. My other brothers and sister became very divided from the SBS trauma.

       My son’s abuse had a horrible effect on our lives, but we have each other and learned how to pick up the pieces and make it work. Amber’s children were affected so badly, not only by losing their mother but by their dad leaving. SBS is like a fire that just destroys everything in its path.

       —Melissa Walker

      OPTIC NERVE SHEATH HEMORRHAGE

      As previously noted, optic nerve sheath hemorrhage is very specific to Shaken Baby Syndrome and is a common finding during an autopsy. There is bleeding below the sheath that covers the optic nerve. Bhardwaj and his team found that a diagnosis of optic nerve sheath hemorrhage in 72 percent of examined children was associated with abusive head trauma.14 This important conclusion was also confirmed by Wygnanski-Jaffe and colleagues where they showed a significantly more common association of optic nerve sheath hemorrhage and SBS (P is less than .0001, which is less than one in ten thousand cases and very