Imagine answering the phone and hearing your 2-year-old grandson is in an ambulance. The confusion of what could possibly be happening alongside the fear of what could happen next mixing in your gut. You rush to the hospital yourself, catch a glimpse of his small body attached to so many wires, and wait in a private waiting room with police officers filling the empty spaces. Your first interaction with the doctor is to hear his angry demand, “Who did this to this baby?”
Michelle lived this experience more than three years ago. She didn’t fully understand what had happened at that point, but over the next hours and days, the pieces fell into place. Her grandson, Kay, had been shaken, probably more than once. Just a few weeks earlier, Michelle’s husband, Toby, had noticed lethargy, difficulty breathing, and other troubling symptoms after picking him up for the weekend. Toby took Kay to the emergency room. After an MRI showed no injuries and behaviors seemed to return to normal, he was sent home. Michelle and Toby offered to help with childcare, but weren’t taken up on it and nothing more went wrong…until whatever proceeded that phone call.
Back at the hospital, the doctor tried to explain what they might be facing IF Kay survived. Michelle recalls, “He could have cognitive disabilities along with the loss of vision, loss of hearing, not be able to walk…at this point I felt like I was listening to the teacher on Charlie Brown…whaa-whaa-whaa-whaa. I felt like I was in a nightmare.”
Kay was kept in a coma for ten days. While he was fighting to live, having surgeries to repair brain bleeds, and having tubes drain fluid building in his swollen brain, Michelle and Toby were in court fighting for him too. Four days after he was taken to the hospital, they filed for custody of their grandson – their son’s son. Michelle’s mind was still spinning, but she “just did what needed to be done and moved to the next thing to be taken care of.” Kay was eventually brought out of his coma and dealt with drug withdrawals, healing from his injuries and surgeries, and an assortment of therapies. After four weeks in the hospital he was released and went home with Michelle and Toby. That home wasn’t permanent until two, long years later.
During those emotionally and financially draining years, Michelle focused on her family, her education, and her faith – not necessarily in that order. Kay’s grandparents on his mother’s side fought for custody, as well. There were hurt feelings and relationships damaged. Not only was there the custody hearing, but also the investigation into what happened. However, that was never completed. The original officers that took statements and asked questions at the hospital were homicide detectives, which tells you something sobering about Kay’s initial prognosis. They neglected to hand the case off to a different department once it was clear that Kay would live and no one was ever arrested or charged. When Toby called to ask about this he was told to be thankful Kay was alive, and he was so they didn’t follow up on it any further.
This is perhaps the one point that sticks in Michelle’s craw a little. “I’d like to think that I’m not the one to judge…but I know deep down how pissed I am at the situation. Now that I work in the field and I know the proper procedures I would of handled things a bit more aggressively.”
Without an arrest, though, Michelle and her family have done their best for Kay. “I know it was a hard adjustment for the whole family,” Michelle told me. Aside from Kay’s father, Michelle and Toby have two other children, now aged 18 (and in her first year of college) and 15 years. They’ve also welcomed a second 15-year-old into their home to live with them as well. Michelle also has a wonderful network of support in her parents, siblings, close friends, and their Child Protection Worker. All of these people have witnessed Kay’s progress and growth over the past few years.
Kay is now, “A rambunctious 5 year old boy who was taught that his delays were NOT a handicap.” This fall he started Kindergarten in an integrated setting. He takes Tae Kwan Do, receives physical therapy, occupational therapy, speech therapy, and special education services. He’s impulsive and has vision problems, but is on track cognitively. He wears a Sure-Step ankle brace and a Kiddie Gait brace to help with range of motion. This is, “All typical for Kaydence and he will continue to thrive!”
As for Michelle, she’s thriving too. “There are times I get really mad at Kay’s parents for putting me in this position of raising a young child again, especially at the beginning, but three years later we’ve just become accustomed to what it is.”
Michelle completed her Bachelor’s degree in social work and works with families and children who have been sexually or physically abused, helping them through the police process. She is also an advocate and parent supporter, assisting families with children in special education programs and needing Individualized Education Programs, or IEPs. She attended a Shaken Baby Conference and will educate, “Anyone who will listen.” Last year she worked with Kay’s preschool to raise over $800 to purchase a simulator doll and come a step closer in her goal of developing a 501c3 organization that will focus on future parents and caregivers called For Crying Out Loud. Michelle’s dream non-profit will potentially offer education, prevention, and a support group to those living with what happens after Shaken Baby Syndrome.
I’ve wanted to highlight Michelle and her story and not concentrate on the frightening and disheartening reality of Shaken Baby Syndrome (SBS) but, of course, since that April day more than three years ago…the two are tightly woven together. Michelle and her family are obviously loving people who stepped up in a big way and have made a commitment to continue doing so, for Kay and others. Bringing attention to SBS is Michelle’s goal and, therefore, it is mine here too.
According to The National Center on Shaken Baby Syndrome, it is the, “term used to describe the constellation of signs and symptoms resulting from violent shaking or shaking and impacting of the head of an infant or small child.” And common symptoms include:
- Lethargy / decreased muscle tone
- Extreme irritability
- Decreased appetite, poor feeding or vomiting for no apparent reason
- Grab-type bruises on arms or chest are rare
- No smiling or vocalization
- Poor sucking or swallowing
- Rigidity or posturing
- Difficulty breathing
- Head or forehead appears larger than usual or soft-spot on head appears to be bulging
- Inability to lift head
- Inability of eyes to focus or track movement or unequal size of pupils
There is always another way to handle the stress of parenting or caregiving. If you need help, reach out! You’re not meant to do it alone. If you know of others who need help, offer it – give it. Be the village that helps raise the children up. This is Michelle’s message to you. This is my plea today too.
If you’d like more information please ask your doctor or check www.dontshake.org.