By Nate Rau and Jessica Bliss, The Tennessean
Beginning on the day he was born six weeks premature last year, an East Tennessee infant had to fight just to stay alive.
Born with an array of heart conditions - a hypoplastic right ventricle, pulmonary atresia and a ventricular septal defect - the baby had a shunt implanted in his heart to regulate the blood flow.
Because of his courage and ability to flash a smile even as he battled pneumonia and complications from his heart problems, his grandmother nicknamed the boy "Little Man." But in early June, the doctors and nurses caring for the infant began to question whether his mother was giving him proper care.
Two checkups with the child's pediatrician were missed. Prescriptions were not filled on time, leading to concerns that the infant was not being administered proper doses of medication. Then on June 8, a doctor observed what appeared to be a cigarette burn on the baby's leg.
Allegations of abuse were reported to the Department of Children's Services, which opened an investigation related to medical maltreatment for failing to give the proper medications and physical abuse for the cigarette burn. On June 12, just four days after the allegation was made, DCS categorized the medical maltreatment as unfounded. Six days after that, Little Man was dead.
When she heard about the cigarette burn, the grandmother said she asked DCS to give her custody of her grandson because she was concerned her daughter was not giving him the care he needed. Instead, the investigation remained open until the baby's death on June 18, when his family found him face down in his crib and not breathing. The death of the 4-month-old was ultimately ruled an accident, according to an autopsy report.
"I am mad at DCS, because if they would have done just a little research they would have seen that the appointments he actually went to, it was me taking him," said the East Tennessee grandmother, who asked not to be named in this story to protect her privacy.
Cases of alleged medical maltreatment represent some of the most difficult for DCS to investigate because they involve complex medical conditions and questions about whether parents are providing the best care possible.
The Tennessean reviewed 42 cases of children whose deaths or near deaths were investigated by DCS in 2012. Of those cases, 11 had claims of medical maltreatment at some point, but just two allegations were ultimately categorized as indicated, which is the department's term for when it believes maltreatment did occur. During the fiscal year that ended on June 30, 2012, DCS received 3,242 allegations of medical maltreatment.
'A really tough job'
Spring Hill pediatrician Dr. Shontae Buffington, who serves as the fellow-at-large representing Middle Tennessee for the Tennessee chapter of the American Academy of Pediatrics, estimates pediatricians in the statewide organization each typically see between three to five cases a year that could represent medical maltreatment.
Buffington said she believes DCS has a difficult task sifting through complicated medical issues to determine whether maltreatment has occurred. She said she understood DCS could receive such a claim in custody cases in which one parent believes the other isn't taking a sick child to the doctor's office in a timely manner.
But while Buffington was sympathetic to the complicated nature of such investigations, she expressed frustration at how slow the child welfare agency responds to such abuse claims by doctors.
Buffington said she also was troubled that DCS caseworkers without apparent medical expertise sometimes challenged her medical opinions.
"The department has an extremely tough job," Buffington said. "In our world, there are (custody issues), divorced people, remarried folks. Sometimes the parent really wants to get back at that other parent, so they have all kinds of false claims to sift through. Plus, they have the real claims from us. They've got a really tough job."
The Tennessean's review of the child death investigations found examples of the difficult cases Buffington mentioned.
One case involved a family previously investigated for medical maltreatment whose daughter died of complications from Down syndrome and congestive heart failure. Another case involved an infant with Beckwith-Wiedemann syndrome, a severe birth defect resulting in overgrowth of skin, bones and organs.
In that case, police were called to investigate after an infant girl was found dead in her bassinet. Though an autopsy showed she died of natural causes, police found a filthy home covered in dog feces and clutter. DCS had been alerted to the case previously after the family arrived at a physical therapy session with the girl, who had a severe fever. No medical maltreatment was indicated, according to the investigation file.
"Sometimes you're just dealing with people who aren't smart who don't understand the severity of a condition," Buffington said. "In those cases, you try to get them extra resources or work with TennCare or their insurance to provide them extra help."
In recent months, DCS has taken steps to improve the way it investigates medical maltreatment, particularly in cases of fatalities. DCS Commissioner Jim Henry said the department is adding four nurses, who will be tasked with reviewing children's health files and making recommendations for action.
DCS also is adding an independent physician to its fatality review team. Henry said the move will allow for an expert outside the department to assess how DCS responds to cases with medical issues.
Additionally, DCS is hoping to improve the way it investigates deaths involving possible medical maltreatment by referring children and parents for psychological evaluations and conducting reviews of medical, educational, mental health and other records.
"What I have done at the department is make health care one of the major issues," Henry said. "The first thing we want to do is make the sure kids are safe and then make sure they are healthy.
"We are going to have safety analysis as far as our death reviews. And it's not just to investigate, but if we can take a look what we have done and see where we made mistakes or our actions were questionable, then maybe it will prevent us from making the same mistake again."