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March 8, 2004

03.07.04 A case of too much silence

From: Grand Junction Sentinel - Grand Junction,CO,USA - Mar 7, 2004

By Ann Winterholter The Daily Sentinel

Kobe Johnson’s deafness wasn’t suspected until he was 1? and lying on the floor nose-to-nose with the family dog, mimicking its moving mouth without the bark.

“Never in my wildest dreams did I think he was deaf,” said Denise Johnson, Kobe’s mother.

But he is.

The Grand Valley toddler is also at the center of a civil lawsuit filed by his parents, Ron and Denise Johnson, against St. Mary’s Hospital last year.

The lawsuit claimed the hospital failed to tell the family Kobe’s newborn hearing test indicated he had hearing loss and failed to retest his hearing before he left the hospital, as is suggested in state guidelines for infants such as Kobe who do not pass an initial hearing screening.

The lawsuit alleges St. Mary’s failed to tell the family or Kobe’s doctor retesting was needed after discharge, then three months later reported to the state Kobe was deaf in both ears.

In addition, the state’s newborn hearing-screening program didn’t contact the Johnsons as it was supposed to after being informed Kobe was bilaterally deaf, said Denise, who could not discuss the lawsuit or a settlement recently reached with St. Mary’s.

While the terms of the settlement are sealed, Kobe’s story has brought to light how a child could slip undetected through the hands of family, health providers and officials.

Big for his 2? years, Kobe is in a race to learn sounds, language and speech that come naturally to youngsters half his age.

Last summer, Daily Sentinel readers followed Kobe as he received a cochlear implant in July and began hearing sounds in August.

Earlier this year he said his first two words, “mama” and “more.”

But Kobe’s path to hearing and speaking is hard won in hours of therapy, coaching and visits to medical offices.

According to medical research and the Johnsons’ lawsuit, it could have been much easier.



On June 6, 2001, the day after Kobe was born, he underwent auditory testing and an audiogram was produced at St. Mary’s diagnostics department, according to a lawsuit filed in Mesa County District Court by the Johnsons’ attorney, Yeulin V. Willett, on Kobe’s second birthday.

Denise was told the test and audiogram were inconclusive, the equipment was not functioning properly and “follow-up testing would be done,” the lawsuit said.

A St. Mary’s employee later told Denise diagnostics employees tried to retest Kobe the next day but found the mother and son had already gone home from the hospital, the lawsuit said.

“Denise Johnson had no concerns that the retesting had not been done, nor that it may have been an abnormal test, as she and her son were discharged and no one communicated anything negative or to the contrary, as they had communicated as to other, minor, conditions of Plaintiff Kobe Johnson,” the lawsuit said.

St. Mary’s then reported to the state that Kobe was bilaterally deaf, which is “inconsistent with St. Mary’s own written and verbal communications to the effect that the test was inconclusive, that they had equipment problems and that retesting needed to be completed,” the lawsuit said.

According to the lawsuit, St. Mary’s said it made “some communication” to Kobe’s doctor about “potential problems” with the baby’s auditory testing.

Kobe’s physician and practice “received absolutely no communication” concerning auditory testing or potential problems, the lawsuit said.

At Kobe’s birth and for 10 months afterward, the Johnsons were insured by Anthem, an independent licensee of Blue Cross and Blue Shield, which covers the costs of cochlear implants, implant surgery and therapy, the lawsuit said.

But in May 2002, Ron Johnson changed employment, and the family’s insurance coverage was switched to Rocky Mountain Health Plans, which does not cover cochlear implants or therapy, the lawsuit said.

Had the Johnsons known at that time Kobe was deaf, Ron would not have changed employment or insurance coverage, and the family would have sought care for Kobe earlier, the lawsuit said.

As a result of St. Mary’s negligence regarding its “obligations” as a health-care provider, the Johnsons were uninsured for the medical care Kobe needed, and the toddler’s treatment was delayed by more than a year, causing “temporary developmental disability and delay of recovery, and potential permanent developmental and/or vocational disability,” the lawsuit said.

The Johnsons’ lawsuit was seeking compensation that included the cost of a cochlear implant device and surgery, full cost of therapeutic care for 10 years, cost of all other medical care, services and devices, loss of wages and impaired earning capacity, cost of nursing care, travel, vocational therapy, vocational rehabilitation and tutoring.

Attorneys estimate a settlement for a medical malpractice case such as this may be in the $25,000 to $50,000 range.

“St. Mary’s Hospital and Regional Medical Center follows the guidelines set by the American Academy of Pediatrics. Those guidelines are listed in what they call the Red Book,” which can be found online at, said Devra Ashby, St. Ma ry’s public-relations representative.

Ashby said federal law prohibits the hospital from talking about the case.



An average of three in 1,000 babies have some form of hearing loss, said Christine Yoshinaga-Itano, a professor of speech, language and hearing sciences and interim vice provost and associate vice chancellor for diversity and equity at the University of Colorado.

About 1.5 in 1,000 have permanent bilateral hearing loss, and one in 1,000 has a permanent unilateral hearing loss, Yoshinaga-Itano said.

There were 1,960 babies born at St. Mary’s in 2003, Ashby said.

Hearing loss must be treated during the first two years of life, when the language base is being created in the brain, said Dr. Albert Mehl, a pediatrician at Kaiser Pemanente in Boulder, chairman of the Colorado Infant Hearing Advisory Committee and a member of the American Academy of Pediatrics’ task force on newborn hearing screening.

After that, “the brain is mainly finished growing.”

Without the current technology, the average age a child with hearing loss is identified is 2 to 2? years old, Yoshinaga-Itano said.

Yoshinaga-Itano helped conduct a 2000-2001 study involving 294 children with significant hearing loss.

It showed that a child born at a hospital in Colorado with newborn hearing screening “had an 80 percent probability of having language development that would fall well within the normal range of language development,” she said.

“These children would not test language disabled,” she said.

The study also found that a child born in a Colorado hospital that didn’t screen had a 35 percent probability of having language in the normal range, she said.

Testing, identification and intervention within the first six months of life gave a child a 4-out-of-5 chance of having language skills comparable to peers, Yoshinaga-Itano said.

“It is incredible, and what it says is there is a sensitive period,” she said.

“Of all the babies that we identify as newborns with hearing loss, 9-out-of-10 are not profoundly deaf, they are hard of hearing,” Mehl said.

Treatment would include a hearing aid and speech and language therapy.

One-out-of-10 babies is profoundly deaf and may be appropriate to consider for a cochlear implant, which can be put in at 1 year of age, he said.

Treatment needs to begin before that, though.

“Early intervention for these babies may include early sign language ... so at least they have the foundations of language in their brain,” Mehl said. “Learning spoken language would be a little like learning a second language.”



More than 67,000 children were born in Colorado in 2003 and nearly all of them had their hearing tested compliments of the state’s 1997 Newborn Hearing Screening Legislation.

With 55 hospitals participating, state Newborn Hearing Screening Program data show 96 percent of infants were tested in 2003, said Vickie Thomson, state audiologist consultant for the Colorado Department of Public Health and Environment.

Of the babies who failed the screening, 82 percent were referred for further audiological evaluation, Thomson said.

At St. Mary’s, there were 1,969 babies born, an average of 164 infants a month, Ashby said.

The Grand Junction hospital had a 2003 newborn screening rate of 96.7 percent with 69 percent of babies who failed being referred, according to the program.

The program’s 2003 data is still being evaluated, and those percentages may change some, but “we have the best screening rate in the nation,” Thomson said.

The numbers are up from 2001, the year Kobe was born, when the statewide screening rate was 94.7 percent with 72.94 percent referred, program data said.

While Kobe was part of the 94.7 percent, according to the facts presented in the Johnsons’ lawsuit, he wasn’t in the 72.94 percent.

The state was sent the results of Kobe’s first screening but did not contact the family to see if he had been retested, Denise said.

According to program guidelines from December 2000, the results of a baby’s hearing test were to be forwarded to the hearing screening program when the birth certificate was electronically sent by the hospital to the state.

The hospital was supposed to retest newborns who failed their first screening before sending them home. Infants who again did not pass were to be referred for a full audiological evaluation. The results of that evaluation were to be sent to the state program.

If hearing loss was determined before the child was 3 months of age, a Colorado hearing-resource coordinator with the screening program was to contact the child’s family and connect it with services and with any funding it may need to help with therapy, a hearing aid or cochlear implant depending on the situation. The coordinator also fulfills the federal mandate of the Individuals with Disabilities Education Act that children with hearing loss get services.

With Kobe, none of this happened until his parents suspected he was deaf and had his hearing fully evaluated in December 2002, Denise said.

The Johnsons were contacted by the resource coordinator in January 2003, she said.

In June 2003, Cathy Gunderson, Thomson’s boss and manager for the Ehdi-Nest project, which tracks the newborn hearing program’s data, called Denise and “said she was sorry that (Kobe) had fallen through the crack,” Denise said.

Thomson cited federal law and would not comment on why the screening program overlooked Kobe’s initial report.

Responsibility for making sure a family and baby receive follow-up evaluations and help with hearing loss depends on many people, Thomson said.

It depends on each hospital’s protocol. “Most hospitals are taking responsibility for contacting the family and the doctor,” she said. “And the doctors have some responsibility to make sure the families get back in.”

But part of the problem in tracking infants is that Colorado’s newborn hearing-screening law doesn’t say who is responsible for making sure a child is retested or followed up, she said.

In addition, the law, which calls for hearing screening to be conducted on no fewer than 85 percent of infants born in hospitals, leaves a 15 percent hole of subjective legal responsibility.



Making sure all children who fail an initial hearing test are retested is “our biggest project now,” Mehl said.

“We’d like hospitals to keep their fail rate at discharge at less than 4 percent,” Thomson said.

The newborn screening program now has the Ehdi-Nest project database, provided in a Centers for Disease Control and Prevention grant, which allows the state and health providers to better track infants, she said.

The database was not implemented until after Kobe was born.

Starting in February, the program also began sending letters to every family with a home birth, families that had a baby who was missed at the hospital or failed the initial screening at the hospital and families with an infant that didn’t pass a second evaluation, Thomson said.

The letter will make sure the parents know their children’s hearing status and who they need to contact.

The letter “safety net” wasn’t implemented until this year because legal counsel had to confirm the letters were a reasonable use of privacy information under HIPAA, Mehl said.

In the Grand Valley, the letters will be sent through the Mesa County Department of Health and last week Judy Brock, supervisor and regional team leader for the state’s Health Care Program for Children with Special Needs (HCP), was excited to have on her desk a list of the names of those who needed to receive letters.

There was a period of time when the county received a record of newborns’ hearing tests, she said.

A consortium of health-care providers, educators and parents developed the reporting within the county as a standard of practice “so that we could get information back to HCP on any child that failed so we could track them,” Brock said.

But when birth certificates and test results began being transmitted electronically to the state, the county was completely bypassed, she said.

Then a federal law known as “HIPAA” came along and further complicated things with privacy issues, she said. It had to be determined that officials had a reasonable right to access private medical information or the authority to contact a family based on that information.

“The reason we started this in the first place is we didn’t want kids falling through the cracks,” Brock said.



These days, when Denise Johnson sees a pregnant woman, she wants to go up to her and tell her how important it is that her baby’s hearing is tested.

“Time is something you can’t give back,” Denise said.

In order for Kobe to have a chance at mainstreaming when he is school age, specialists want him to be in therapy three or four times a week, she said.

The cost of that therapy can range from $150 to $300 an hour, she said. Four hours of therapy a week for Kobe costs from $600 to $900. In a year that can add up to $31,200 to $41,800.

Twice a week for two hours Kobe also attends a class for children with speech and language delay at Mesa Developmental Services. He is learning how to share and relate socially with children and being given a more structured learning environment than Denise is able to provide at home, she said.

Kobe better understands concepts of some words and what to do when given instructions, she said.

When he drives his little cars around the floor he now makes an “mmm” sound for a motor. When he plays with a toy fire engine, it’s a siren sound.

An active toddler, Kobe likes to take the cochlear implant’s ear piece off and play with it.

Often when Denise goes to take him out of his car seat, she’ll find he’s taken it apart, and pieces are stuck into various cracks Kobe can reach from his chair.

Denise said she is constantly drawing his attention to the noises things make so he knows to connect the two.

“It’s all about being a sponge and putting as much as we can in there,” she said.

Denise said she is told this is the point when many parents give up. They are tired of trying to find therapy, funding for therapy and explaining everything to the child.

“I still have the drive,” Denise said. “It’s all going to be worth it ... the price you pay is worth it.”

“When you are late identified, the most significant factor of whether you are going to end up in the group that succeeds is family involvement,” Yoshinaga-Itano said. “The later (a child) is identified, the harder it is for the family. They have to work twice as hard.”

For the Johnsons’ work and drive to give Kobe as much opportunity as possible — they made sure he received a cochlear implant despite not having insurance coverage — the Colorado Neurological Institute will award Kobe and his family one of its 2004 Hope Awards in May.

“I don’t know a parent who wouldn’t do what I’ve done,” Denise said.

Ann Winterholter can be reached via e-mail at

© 2004 Cox Newspapers, Inc. - The Daily Sentinel