Susan Jones is anxious to share the improvements being made by her son Braxson.
Nearly a year and a half after suffering injuries that resulted in a criminal abuse case against his father, the 2-year-old boy is gaining strength, no longer throws up eight to 12 times a day, is taking far less seizure medication, and can now smile and laugh, she said.
“He can roll over,” Jones said.
But Braxson remains blind and on a feeding tube, which he likely will rely on his entire life, she said. The boy is unable to sit up while other children his age are running around and beginning to explore the world around them.
“He’ll never walk,” Jones said. “He’ll never talk. He’ll always be at home with me.”
Braxson, who already has undergone multiple brain and eye surgeries and spent eight days in a coma, faces further surgery to rebuild his skull that had to be opened to accommodate the brain swelling from the original injuries.
“They’re deciding if they’re going to take a rib to put where the skull is,” Jones said.
All that was placed on hold for at least a short time on Monday as Braxson celebrated his second birthday at the nearby Lakes of the Four Seasons Fire Department with those who first came to his aid July 24, 2016.
Criminal case against dad still pending
Jones said she was working an overnight shift as a nurse on that day when she received an early morning call from her estranged husband, Curtis Jones, saying their son was cold, stiff and not opening his eyes.
“What are you doing calling me?” she told Curtis, instructing him to call 911.
During that 911 call, 47-year-old Curtis, a former Porter County police officer, spoke to the 911 operator about mutual acquaintances and downplayed his son’s condition, according to charging information. He also requested that emergency responders not use emergency lights and sirens.
Authorities said the young boy could be heard on the recording of the 911 call displaying agonal breathing, which is characteristic of someone of the verge of dying.
The child was rushed to a local hospital and then to the Ann & Robert H. Lurie Children’s Hospital of Chicago, where a doctor said the child suffered “the worst brain injury I have ever seen,” according to court documents.
The doctors determined that the injuries were consistent with being shaken and must have occurred near the time of the 911 call or the boy would have died before reaching the hospital, according to officials.
Curtis Jones, who is charged with felony counts of battery resulting in serious bodily injury to a person less than 14 years of age, aggravated battery and neglect of a dependent, has a status hearing scheduled for Jan. 22 before Porter Superior Court Judge Roger Bradford.
He currently is living and working in Florida while his case is pending, according to Larry Rogers, his defense attorney.
He is there, at least in part, to avoid the backlash he has received on social media from Susan Jones, according to Rogers.
“He wants to avoid any conflict with his ex-wife,” Rogers said.
Susan Jones maintains a Facebook page titled Justice for Brax that features the mugshot of Curtis Jones and updates on Braxson.
Braxson gets national attention
“What a fighter Susan is,” said Marisa McPeek-Stringham, information and research specialist with the National Center on Shaken Baby Syndrome.
“She’s just fighting for him to get justice,” she said. “She’s very inspiring.”
The organization was so moved by Braxson’s case that it decided to feature it as part of this year’s Giving Tuesday campaign, which is part of a national effort kicking off the charitable giving season the Tuesday following Thanksgiving, McPeek-Stringham said.
There are 1,200 to 1,400 cases of shaken baby syndrome/abusive head trauma reported in this country each year, and it is the No. 1 cause of child abuse death for children under age 2, she said.
Jones said she would like to see Indiana join other states in requiring new parents to watch a video of shaken baby syndrome before leaving the hospital with their newborns.
The National Center on Shaken Baby Syndrome has a Period of Purple Crying campaign aimed at educating adults about and reducing the incidence of shaken baby syndrome/abusive head trauma.
Jones said she tried returning to her nursing job after being away for 15 months, but had to quit again recently after just a few months on the job when the daily care for Braxson became too much for non-professional caregivers.
“I’m fighting to get him nursing care,” she said.
Jones also is exploring ways of funding stem cell treatments at $14,000 each, which have the potential to help repair Braxson’s vision, motor skills, swallowing and alertness.
At the same time, she also is mother to another son, 3-year-old son Brantley, who joins in the caregiving as much as he can.
“He’s always kissing him, saying, ‘Love you, baby,'” she said.
Susan Jones said this is not where she thought she would be at this point in her life.
“I thought I’d be a nurse, a mom and living happily ever after,” she said. “Just a normal life.”
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Scott Juceam is one of the leading advocates against Shaken Baby Syndrome. Scott’s life changed when his daughter Hannah was shaken to death by her nanny in 2006. Since then, Scott has dedicated his life to preventing Shaken Baby Syndrome and child abuse.