Living with shaken baby syndrome
MOORHEAD - Jessica Jackson hadn't left her 10-week-old daughter until that day. A pregnant friend thought she was in labor. Jackson went to the hospital with her, and left Lulu with a family member.
It was false labor. Jackson was gone for one hour and 15 minutes. When she returned to her Tucson, Ariz., home, her baby girl was being resuscitated.
Lindsey Scholar had been at work for about 3 hours. Her 8-week-old daughter's biological father met her in her Winger, Minn., driveway to tell her something was wrong with baby Taylor. She was seizing and gray in color. Taylor was life-flighted to what is now Essentia Health in Fargo.
Both babies were on life support and spent weeks in intensive care after surgery. Both lost about 50 percent of their brain function, though on opposite sides of their brains.
Both babies had been shaken by their caregivers, in both cases relatives.
And in those brief moments, both families' lives changed forever.
Lulu is now 5 years old. She has cerebral palsy, microcephaly, and behavior problems due to sensory integration disorder, Jackson says.
Taylor, 10, uses a wheelchair, is nonverbal and blind out of the left side of both eyes. She will always need 24-hour care, Scholar says.
The two mothers met on an online support group, where many parents affected by Shaken Baby Syndrome turn for an outlet, to talk to someone else in their shoes.
"I just didn't have anybody in Tucson that I knew that had the same thing," Jackson says. "There are things we can say to each other that we can't say to even our closest friends that don't have these circumstances."
After Jackson's husband was transferred to the Fargo-Moorhead area for work, Scholar and Jackson realized they live within a few minutes' drive of each other.
They've now created an organization to connect parents affected by Shaken Baby Syndrome/Abusive Head Trauma, to educate the public about the condition, and to hopefully prevent it from happening to other families. Stop the Shake offers a 24-hour hotline for parents and professionals to call.
Tim Hathaway, executive director of Prevent Child Abuse North Dakota, says he is thrilled about the efforts of Stop the Shake. His office has been working to distribute The Period of Purple Crying materials to parents of newborns in the state. The program, including a DVD and booklet, discusses the dangers of shaking a baby, as well as child development, crying and managing parental stress.
Hathaway says it's hard to get concrete statistics on local incidences of Shaken Baby Syndrome because of the way the cases are documented and the fact that mild cases can go unreported. But it is happening in our communities, he says.
Last month, a 5-month-old Pelican Rapids, Minn., boy died in an alleged shaken baby case. Hathaway also recalls cases in Bismarck and Grand Forks, N.D.
He stresses these events are fairly isolated, but he notes that each case is costly - emotionally and financially.
"Every time one of these cases happen, it is tragic for the family and it has huge cost implications for the families and communities," Hathaway says. "On top of all the heartbreak in the situation, there is ongoing difficulty."
Amanda Olson is another Moorhead mom living with Shaken Baby Syndrome. Her 10-year-old daughter Justice was shaken by Olson's stepfather when she was 4½ months old. The family lived in Oklahoma at the time.
"He would watch her while me and my husband were at work," Olson says. "After it happened, me and my husband lost custody of her while the courts figured out what happened."
Olson says it took nearly two years for her to regain custody of Justice, who is now 10. Justice is completely blind and in a wheelchair. She has severe learning disabilities, Olson says.
"The doctor thought she was going to die and that she would never make it. She's doing really good compared to what he said," she says.
Olson says it is difficult to care for Justice because she doesn't have a handicapped-accessible home. People stare at Justice when they go to stores. Olson's 8-year-old daughter, Madison, sticks up for her sister. "She's younger but takes on the older child role," Olson says.
Olson has connected with Scholar and Jackson, and focused her efforts with Stop the Shake on proposing legislative changes in both North Dakota and Minnesota.
Stop the Shake would the third week of April to be designated Shaken Baby Syndrome week in both states. The women would like to see standard sentences for this kind of crime.
Taylor's biological father received a 6-year sentence in an Alford plea. His parental rights were terminated. In Lulu's case, the family member received 13½ years in prison. Olson's stepfather was sentenced to 20 years in an Oklahoma state prison.
Meanwhile, the families continue to live with the consequences.
Olson says she hasn't forgiven her stepfather. "Justice was born a normal child. Now she'll never be able to see what she would've been able to do," Olson says.
For Scholar, it's been a matter of coming to terms with who Taylor is.
"Despite her injuries, despite her limitations, she has a very fulfilled life," she says. "She's one of the happiest children you'll ever meet."
Jackson says there can be a lot of shame associated with Shaken Baby Syndrome. When she takes Lulu to the clinic, the nurse sometimes assumes she's Lulu's foster mom, which is hurtful.
She asks herself again and again if there was any way she could have changed the outcome.
Jackson says there are times when she sees Lulu struggle that she gets angry, but she's chosen to forgive the offender while not condoning what he did.
She remembers being frustrated by Lulu's crying fits. There were times that Jackson would put the baby in her crib, go in the bathroom, turn on the shower and cry, simply to not hear her screams for five minutes.
"Through healing, we realize they weren't monsters that did this," Jackson says. "They were frustrated. The only difference between me and the person who watched my child was that I walked away."
She says parents need to realize it's normal to feel frustrated when a baby won't stop crying. They need to talk about these frustrations, and reach out for help.
"When you think about how easy it can be to make a wrong decision in seconds, it seems more understandable," Jackson says. "But those few seconds change lives. It's a ripple effect."
For more info
Prevent Child Abuse North Dakota: www.stopchildabusend.com
The Period of Purple Crying: www.purplecrying.info
Understanding Shaken Baby Syndrome
When a baby is shaken violently, the brain rotates within the skull cavity, injuring or destroying brain tissue. Blood vessels can tear, leading to bleeding around the brain and these pools of blood can cause additional brain damage.
Long-term consequences of Shaken Baby Syndrome include:
Physical and learning disabilities, including blindness, hearing impairment and speech disabilities
Source: National Center on Shaken Baby Syndrome, www.dontshake.org
Readers can reach Forum reporter Sherri Richards at (701) 241-5556