One mother’s story: shaken baby syndrome

Here, the mother of a Boston Children’s Hospital patient shares the story of how her husband shook their 2-month-old daughter, and how they’ve spent the last few years trying to put their lives back together.

Your life can change in the blink of an eye. I wouldn’t have believed that until it happened to me.

Our daughter was almost 2 months old and I was going out for an afternoon with a friend. I was taking my older daughter, Tessa*, while my husband stayed home with our newborn, Erin. When Tessa and I arrived home I was reassured to see Erin sleeping on my husband’s shoulder. I asked how things were and he said that it had been a good day. I was happy to see the two of them sharing an intimate moment.

Over the next two days, Erin was throwing up her bottles and not sleeping well. On the third morning, I changed her diaper and she had a black stool. Shortly after, she started shaking on one side of her body. I called my husband and said that I was going to take her to the doctor right away. I had him on speaker phone so I could tend to the baby. He asked me to take it off speaker and told me that while I’d been out two days earlier he couldn’t get Erin to sleep, and he shook her to get her to stop crying. I was shocked. Why would he do that? Why didn’t he tell me sooner? He said that he was terrified and didn’t know what to do. I told him I was going to call the doctor because she needed to be seen immediately. I also said that I was going to have to tell them what he’d done. He said that all that mattered was that Erin was safe and her medical needs attended to.

The doctor’s office told me to bring her in right away. I didn’t mention the fact that she’d been shaken until we were in the office and Erin had another seizure. From Erin’s pediatrician’s office we went to our local hospital, where I had to repeat the story of how she had been injured and speak to a social worker.

Erin was tiny for her age and veins were difficult to find, so they had to run a line into a vein on her head so they could take blood. This aged me 10 years at least. My poor sweet girl! How could this be happening? When was I going to wake up from this nightmare?

The decision came to transfer Erin to Boston Children’s Hospital. I remember that I was not allowed to sit in the back of the ambulance with her, but instead had to sit in front with the driver. My thoughts were racing. The little I knew about Shaken Baby Syndrome was that it is considered a form of child abuse and my husband could go to jail. The drive to Boston was interminable.

When we arrived, my husband was there. Erin’s color had gone pasty and she had another seizure. The neurologist on call gave her some medication to calm the seizure. Seeing my tiny baby hooked up to all different kinds of machines is an image that I’ll never forget. While in the emergency room, a state trooper and some police officers from our town came to speak to my husband and me. They spoke to us separately. As I began relaying the story, my composure dissipated and the tears began to flow. I blamed myself. I should never have gone out that day. How could I allow this to happen to Erin? I remember the officer saying to me that it was not my fault. I should have been able to trust my husband with our young daughter. Trust is a small little word that carries so much weight.

After the questioning, Erin was admitted to the Neonatal Intensive Care Unit (NICU). My husband wasn’t allowed in to see her, but I visited her there once she had been put in a room, spoke with her nurses and then headed home to Tessa. On the train ride home, the Department of Social Services called and told me what needed to happen according to the law. They said that my husband could not come home, and I had to go to the court the next day and take out a restraining order against him or my daughters would go into foster care.

My husband was taken by the police back to our town. They informed him that he would need to go to the police station to be charged with the crime the following day. He picked me up after I got off the train, and I told him that he could not come home. He sobbed and apologized for hurting Erin. He dropped me in the driveway and went to a hotel.

Tessa and I slept together that night. I can’t believe I slept, but exhaustion overtook me. I remember hugging Tessa throughout most of the night.

The next day, I took Tessa to the sitter’s house, dropped off clothes for my husband at the hotel, told him to get a lawyer and went to Boston. When I saw Erin in the NICU, her nurses said she’d had a good evening and that the medication had taken care of the seizures. She would need an MRI and X-rays to determine if there had been damage to her brain. Only then could we begin to find out if she would have permanent problems as a result of the shaking. A hospital social worker, who was so compassionate and professional, explained to me that she would only be on our case until we left the hospital, then I would be assigned a social worker from the Department of Social Services (DSS).

My husband had shaken Erin on Sunday. It was Wednesday. Life had changed. My life and my family’s existence were not under my control any longer. What would happen to us? After spending the day with Erin, I went to court and filed the restraining order. The DSS had been very specific about what needed to be included in the order so that I could retain custody of my children. Some of the court employees were not very kind. They reminded me how lucky I was that Erin was not dead. I was an emotional wreck and these civil servants were not being the least bit civil to me.

The local paper picked up the story. The reporter called and had the audacity to ask for “my side of the story.” My job called. Any chance of trying to survive this ordeal in privacy was gone. It was made worse by the treatment I continued to receive from people who knew nothing about our situation, including one of the DSS social workers, who came to my house one morning before I went to visit Erin at the hospital. She read me the riot act, asking how I could have let this happen. “You’re a college educated woman,” she told me. “You don’t fit the usual profile of a mother of a shaken baby.” (I would learn much later at an Early Intervention conference from a state public health official that our demographic was actually the more common one for Shaken Baby Syndrome.)Is this what happens when your child is shaken? Is this how professionals deal with a family in crisis? I was in tears and felt like the worst mother in the world. Hadn’t the police officer told me that this wasn’t my fault? Hadn’t the social worker at the hospital treated me like a human being?

I still had not told my extended family what was going on. I finally called on Friday. One of the hardest phone calls of my life was telling my father what had happened. He was on a plane the next day and was the rock I needed to survive until Erin came home from the hospital the following Wednesday. She was put on Phenobarbital to control the seizures, and to this day has never had another one.

The last three years have been challenging. At first, we didn’t know if Erin would have more seizures or long-term brain damage that would affect her for the rest of her life. A series of MRIs has shown that Erin’s brain has some damage that might impact her vision when she’s older (she wears glasses today), but so far her cognitive abilities have not been affected. She received occupational therapy (OT), physical therapy (PT) and other therapies through Early Intervention (EI) from the time she came home from the hospital until her third birthday. And since aging out of EI, she receives OT, PT and speech therapy services at school twice a week and goes to school five days a week. Despite all of this, I know that we’re fortunate; Erin is a thriving and terrific toddler.

There has of course been a lot of fallout from this. My husband didn’t go to jail, but he pled guilty and is on probation. And are we still together? We are. He wasn’t allowed to move back into our home until sanctioned by the court, 18 months after shaking Erin. He was crushed by this incident. Being forced to live away from us for a year and a half gave him time to think about what happened. He thought he had lost his family. He also knew that he had hurt Erin and, as you can imagine, suffers terrible guilt.

The members of my extended family have handled this situation in different ways. My father hasn’t accepted what happened, but forgives my husband. I’m the oldest of four children. One of my brothers trusts my judgment and has put the incident in the past. My other brother and sister wouldn’t accept my husband’s apology and won’t attend any family function where he is present. This hurts me very deeply, but I cannot change their hearts. My only hope is that they will, in time, forgive him and realize that everyone is human and that the world is not black and white.

And then there’s the inevitable question of what we will tell Erin and Tessa when they get older. While my husband was out of our lives, I had Tessa in her own individual therapy to deal with the fact that her father was not a constant presence in her life, but we didn’t talk about why he was gone. And to be honest, I don’t yet know how to explain this to Erin. My therapist told me that I will have to share this with her that I should be prepared for possible repercussions. When the time comes to have this discussion with the girls, we will do it as a family and with the guidance of a family therapist.

For me, the time apart allowed me to go to therapy and figure out what I wanted for my family. I needed to become whole again so that I could be a strong mother. Together, my husband and I attended —and still attend—couples’ counseling. Forgiving him allowed me to heal. Rebuilding trust is an ongoing process. Not everyone agrees with my decision, but when we sit down to dinner as a family and I see the love in Tessa and Erin’s eyes for their father and mother, I know I made the right decision. Life can change in the blink of an eye, and when I blink, I want to see my family together.

* All names have been changed to protect the family’s identity.

What resources are available to families who become frustrated or angry?

 

American Academy of Pediatrics

National Center for Shaken Baby Center

Massachusetts Shaken Baby Syndrome Prevention Center 

Centers for Disease Control and Prevention (CDC)

 

Parents Helping Parents