Children's Voice Sep/Oct 2006

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Living with the Consequences--My Family's SBS Journey

By Michele Poole

"If your granddaughter lives through the night, she will be a vegetable." On November 21, 1994, I heard those exact words. My 3-month-old baby granddaughter, Gabriela, sustained a traumatic brain injury as a result of being shaken.

This event changed my life and the life of our entire family. That fateful day, my son George admitted that, in a moment of anger and frustration, he shook his infant daughter as he cared for her and her twin sister while their mom was at a part-time job. When I went to the hospital, I had no idea what had happened or the extent of her injuries. When I saw Gabbi in the Pediatric Intensive Care Unit, I did not need anyone to tell me she was close to dying; I could see that through the tears in my eyes.

I thought I had told [my son] everything there was to know about caring for an infant. I never told him not to shake her. It never crossed my mind that anyone would shake a baby or that shaking a baby would cause a fatal or near fatal injury. That is the hidden problem of Shaken Baby Syndrome (SBS). No one ever thinks to tell a parent or child care provider the dangers of shaking a baby in a moment of frustration.

Life as an SBS Victim Family

That first year was surreal. My 24-year-old son was going to jail for five years. I was now, at the ripe age of 44, raising two infant girls that I loved. I wanted to love them as a grandmother, not their mother. I wanted to spoil them and let them get away with things their parents wouldn't let them do. Instead, I was going to court for custody hearings and case plans while the Department of Children and Families of Florida was monitoring the care of the girls at our home.

The first five years of Gabbi's life were immensely difficult. I had no experience dealing with a child overcome with such severe medical needs--one who was unable to communicate even the slightest life-sustaining need without crying or screaming. I was now caring for a child with seizures, tube feedings, endless diaper changes, multiple doctor visits, and late-night emergency room trips.

We finalized adoption of Gabbi and her sister Michele in 1996. George was in jail. The girls' mother understood the children were better off with me, but we still wanted her to have a role in their lives.

In 1998, I attended my first conference on SBS in Utah. What an enlightening but heart-aching experience it was. I learned all about SBS, what people were doing to prevent it, how the legal system works, and when to investigate and prosecute perpetrators. I was learning what all the medical terms meant. I was also learning there were far too many SBS cases each year and more awareness was needed.

I went home armed with so much information. I started contacting schools in my area, dropping off literature, and asking to talk to their students. I went to day care centers and dropped off SBS information. I visited drug rehab centers and spoke to their clients. I contacted women's shelters and other like-minded agencies in the area to give them literature and to request to speak at one of their events. I would talk to anyone if they stood still long enough.

Spreading the Word: Never Shake a Baby

The information on the National Center on Shaken Baby Syndrome (NCSBS) website is wonderful and provides the most accurate accounting to date on SBS. There are now many SBS family sites dedicated in honor of a child's memory or life struggle. More and more sites about infants contain information regarding the dangers of shaking a baby.

Many groups have worked to pass legislation for mandatory education in hospitals. Many states have passed laws to stiffen punishment for perpetrators. Many individuals have spoken on television or in print, sharing their own shaken baby journey. There is still much to do.

Our family is now in its 12th year of our journey. Little Michele is in middle school with glowing grades and a very positive look on life. Hilary Duff is her idol. She loves her sister and helps with her care.

Gabbi attends a charter school in Palm Beach that provides all her therapies as well as education. Gabbi only functions as a 5-month-old, but her school has provided ways for her to actually communicate some of her needs and wants. Gabbi knows she does not like a wet diaper, so they put her on the potty every hour. She has seizures, sometimes as many as 15 a day. We have tried diets along with medicines and have been successful, but her body changes, and we need to find new [medicines]. We are currently using a medicine we can only get from Europe. Amazingly, we have gone from 15 seizures a day, to 2, 1, or none.

Gabbi has had multiple hip surgeries, which I think take more out of me than her. She goes with me to visit middle schools, high schools, parenting classes, drug recovery programs, jails, child abuse prevention seminars, church groups, police, nurses, and DCF workers.

My son was released from jail five years after Gabbi was shaken. I not only lost my grandmother role, I lost my only son. With the circumstances as they are, a relationship with him is impossible.

Many [people] ask me, "How do you do what you do?" I hear, "You are so strong," and "They are so lucky to have you." I respond by saying, "I use the 12 steps of Alcoholics Anonymous." Although I have no addiction problem, I have found that this program's structure gives me the strength to carry on. I believe very much in God and His love for me.

Every time Gabbi clears another hurdle in her life and proves the doctors wrong, I know I am the lucky one.

Our journey continues. We still cross paths with many who are just starting the journey or have been traveling with us for a very long time. We try hard to continue to spread the word. Some people will tell you to make sure your seat belt is buckled, to put your child in the back seat away from the air bag, to wear a helmet when biking or skating, to never let your child sleep on his or her tummy for the first year, to never leave your child unattended at a swimming pool, and to stay away from strangers. SBS victim families will tell you, "Never, ever, shake a baby!"

Michele Poole, Lake Worth, Texas, is a volunteer consultant and fundraiser for NCSBS. Adapted with permission from the NCSBS website.

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