The mother of an infant diagnosed with shaken baby syndrome (SBS) has penned a heartbreaking essay in hopes of raising awareness about this dangerous and life threatening injury.
In an essay for Love What Matters, Angie Setlak says she delivered her son, Xavier, four weeks early after doctors discovered he had stopped growing in utero. The 36-year-old Seattle resident spent 16 days with her son, who weighed just over 3 lbs. at birth, in the Neonatal Intensive Care Unit. After that, she spent three “perfect” months with her son at home.
On her first day back to work after maternity leave, Setlak left her son in the care of his father. Despite their relationship being strained due to infidelity during her pregnancy, Setlak says the couple had agreed to share childcare duties.
“I had been fielding text messages from Xavier’s father all day about how difficult he was being, and I told his dad we would find another [childcare] solution so he didn’t have to watch him during the day,” she wrote. “While on maternity leave, Xavier’s father had been alone with him for two hours tops, and everything had been fine.”
Setlak says she was “nervous” about the arrangement, but Xavier’s father, who had a 10-year-old daughter, reassured her that things would be fine.
Things took a turn when Setlak received a terrifying text from her child’s father.
“He asked me if he could murder the baby now,” she said. “I told him to just hang in there, and I will be home soon.”
Later in the afternoon, Setlak received a message that her son had stopped breathing after choking on milk, and was being taken to the hospital.
“When I got there, I heard my baby crying so I thought everything would be OK,” Setlak wrote. Xavier was rushed for a CT scan while she nervously waited in the waiting room.
“They finally let me know there was bleeding in his brain… His father didn’t have much to say, and just kept repeating, ‘He was choking on milk.'”
After her son was transferred to another hospital that night, police arrived to interview both Setlak and her son’s father. The parents were told their son had a brain bleed due to non-accidental trauma, and the infant was put into a medically induced coma for two weeks.
Doctors prepared Setlak for the worst.
“We were fighting against two things. The trauma and the time he went without oxygen to the brain,” she continued. “I heard everything from, ‘He might be blind’ to ‘He may never be able to learn, walk, talk, move.'”
According to the Centers for Disease Control, SBS is a severe form of head trauma caused by physical child abuse from shaking infants by the shoulders, arms and legs or shaking with impact. One in four infants diagnosed with SBS die as a result of their injuries, with children aged two to four months old at the greatest risk of permanent damage and injury. The CDC notes that cases of SBS have occurred in children up to five years of age.
In less severe cases, babies suffering from SBS may experience an altered sleeping pattern, vomiting, seizures, uncontrollable crying and the inability to nurse or eat.
In more severe cases, symptoms of SBS include lack of pulse, unresponsiveness and breathing problems.
Xavier’s father was immediately arrested for first degree child abuse. After 17 days in hospital, Setlak was able to take her son home from the hospital.
“Since we are almost three months out from the injury, I focus less on the ‘why’ and more on the ‘now what,'” Setlak wrote. “I try to be present with my baby every single moment. I thank God every day for bringing my baby back to me. For my mom who now lives with me as I am a single parent working endlessly to provide for my baby.”
Xavier continues to go to weekly physical and occupational therapy and visits both a neurologist and neurodevelopment specialist.
“Everyone keeps telling me how lucky we are this happened while he was so young, how resilient babies are and how plastic the brain is at this age,” she said. “He is at high risk for developing cerebral [alsy, but we won’t get that diagnosis for another 1.5 years, if he has it. He sees people for early intervention services, and I firmly believe the more we work with him, the better his odds are.”
Only time will reveal the extent of the damage to Xavier’s brain, but Setlak is doing her best to remain strong.
“He is so precious to me. Even if he can’t see. Or walk. Or take care of himself. He is my moon and stars. The light of my life. He is everything I always wanted.”
Since her son’s injury, Setlak has struggled with nightmares. Now, she wants parents to remember that shaken baby syndrome is entirely preventable.
“You put your baby down. You walk away. You cry somewhere or scream, or go talk to someone,” the single mother wrote. “You get your frustrations out, and then come back to your sweet baby and start over again… I hope someone reading our story will take all of it to heart and realize how important it is to not shake a baby.”
“No matter what, you never shake a baby. It’s so easily avoidable. A moment of rage changed my baby forever.”