Parents of ‘medically fragile’ kids likely to lose Sacramento County help
Mia Rogers, 7, holds a drawing she made of nurse Teri Pond. For the first six years of her life, Mia had undiagnosed hypothyroidism, but she's doing well now. Pleased, Pond said: "This is why I do what I do."
Gracie Lynn Johnson was born with devastating medical problems, to an overburdened mother with psychological issues.
It all added up to tragedy.
Gracie is dead and her mother is in the Sacramento County jail, charged with felony child endangerment.
The scenario is all too common to authorities who investigate and document child deaths in Sacramento County. "Medically fragile" children like Gracie, they said, are highly vulnerable.
Of the 67 youngsters who died of abuse and neglect between 2004 and 2008, 16 were known to be medically fragile, with chronic conditions or special health needs, according to the county's Child Death Review Team.
"These children are 100 percent dependent on their parents" for survival, said Angela Rosas, a Sutter Health pediatrician and member of the death review team. "Because of their conditions, parents can get stressed and frustrated. Probably for that reason, these children most definitely are at greater risk of being neglected and abused."
Yet a crucial lifeline for medically fragile youngsters is about to snap.
Starting July 1, if proposed budget cuts become reality, Sacramento County will eliminate its public health nursing program for needy parents.
Since 1998 the program, in which nurses visit families with medically fragile children, has been slashed from 30 nurses to two, said county public health officer Glennah Trochet. The remaining positions now are slated to be cut.
"As it is, we are only able to see the sickest of the sick," said Bernice Walton, public health nursing director for the county. "We know that sending nurses to homes saves lives, and saves costs. I think we will now be looking at a higher rate of harm and death, and an increase in hospital and emergency room use by these very ill children."
One Sacramento mother, Rene Rogers, credits the program for getting to the bottom of a health problem that could have caused brain damage or even killed her daughter Mia.
For the first six years of her life, Mia suffered from undiagnosed hypothyroidism, a hormonal disorder that left her weak and stunted her growth. Untreated, the condition can cause learning disabilities, mental retardation and even coma and death.
"She was very tiny. She would pick at her food. All she wanted to do was sleep," Rogers said. "At school, they treated her like a little baby, and she didn't like that."
It was only after public health nurse Teri Pond visited last year to check on Mia's younger brother that the girl was diagnosed and began treatment. Now Mia is a normal, if petite, 7-year-old.
"Teri pushed her way through the system and got what we needed," said Rogers, who has six children at home. "We are so grateful."
Gracie Lynn Johnson was not so lucky. Nearly a month after authorities found the infant girl's decomposing body in a Rancho Cordova apartment, it remains unclear whether her family was getting any help or monitoring.
The family was targeted to be seen by Child Protective Services, but a communication snafu between that agency and the Sheriff's Department delayed an investigation into possible neglect. By the time a CPS social worker went into the home, it was too late.
The baby's mother, Jennifer Blanchette, needed psychological help, said a relative who declined to talk in detail. Her home was in disarray, the Sheriff's Department said, signaling that she was overwhelmed by her circumstances.
The family may have qualified for at least one of several programs designed to help parents care for children with medical challenges. Gracie, the Sheriff's Department said, was born with severe defects including hydrocephalus, or water on the brain.
When a child is born with serious medical issues, hospitals typically assign a social worker to the family. The social workers can refer parents to the county for assignment to a public health nurse, said Walton. In recent years, however, the program has had to accept only the most pressing cases, with each nurse juggling as many as 40 at a time.
The nurses regularly visit family homes, assessing the child's condition and development, monitoring nutrition and growth and teaching parents critical tools such as feeding and basic medical care.
If the family needs more help, the nurses can help them connect with programs such as the state's Regional Centers, which offer care to infants and toddlers with disabilities or developmental delays. Another program, California Children's Services, arranges and pays for medical care, equipment and rehabilitation for children whose families are unable to pay.
Authorities said that, because of privacy issues, they were unable to discuss whether Gracie Lynn Johnson's family was taking advantage of any programs.
But they pointed out that programs cannot be imposed upon parents unless abuse or neglect is suspected.
"Services are voluntary, and a parent cannot be forced to accept them," said Nancy Lungren of the state Department of Developmental Services.
Rogers, the Sacramento mother, said she jumped at the chance to get help for Mia and her younger son Essiah, who also had developmental delays. A house full of kids, she said, can be stressful.
At first, she said, Pond "was just someone new in the house, a stranger. But after a while we couldn't wait to see her. It was so much easier for her to come to us, instead of having to put all of the kids in the car" and go to a doctor's office or agency, she said.
Mia is a "miracle," said Pond, who gave the girl a hug and a new doll on a recent visit. "This is why I do what I do."
But as budget cuts continue to take a toll on social service programs across the state, Walton said, she worries that more children will end up like Gracie Lynn Johnson.
Seven-year-old Mia Rogers receives a hug from Sacramento County public nurse Teri Pond earlier this month while Mia's mother, Rene Rogers, looks on. Pond played a key role in having Mia diagnosed with and treated for a life-threatening thyroid condition that is now under control. Sacramento County is poised to eliminate its nursing program for parents of "medically fragile" children.
Sacramento County public health nurse Teri Pond, left, talks with mother Rene and daughter Mia earlier this month in the Rogers' Sacramento home. Pond helped Mia get diagnosed for a hormonal disorder that left her weak and stunted her growth. "Teri pushed her way through the system and got what we needed," said Rogers, who has six children at home. "We are so grateful."