Debbie
Ford winds the key on a stuffed horse and a music box begins plinking a
simple lullaby. Her friends, some of her own family, don’t want to hear
it. It’s just too painful.
“Her
legs probably weren’t as big as my finger,” Debbie says, flipping
through an album of baby pictures coupled with tiny foot and hand
prints. Baby pictures are the only pictures she has.
Debbie went to Carolinas Medical Center in 2004 to give birth to twin
girls. At age 40, with teenagers of her own still at home in
Rutherfordton, Debbie learned she was pregnant with twins.
“It brought a whole new spirit to the house which hadn’t been there for a while,” she says.
Her infant daughters got an antibiotic-resistant infection at CMC. To
be fair, we don’t know if infections were any worse at CMC that year
than at any other hospital in the area. That’s because even when there
is an outbreak of infections in a hospital, hospitals in North Carolina
are not required to disclose that outbreak to patients. And the Center
for Disease Control estimates that 90,000 Americans die each year from
infections they acquired while inside a hospital.
When you walk into any restaurant in the Carolinas you can read the
sanitation score right on the wall. It’s state law. You can go online
in Mecklenburg County and read the health inspector’s actual comments.
But if you want to know the infection rate at your local hospital in
North Carolina, it’s a mystery.
Debbie delivered prematurely after an ultrasound showed one of her
twins wasn’t growing as fast as the other. The two girls, Olivia and
Lydia, went immediately to the Neonatal Intensive Care Unit, referred
to by its acronym “NIC – U.”
Debbie saw a lot of sick babies on the NICU. Compared to some of them, Debbie thought her girls were “pretty healthy.”
So when the call came nine days later, Debbie was surprised. “They
called and said if you want to spend some time with her, you need to
come on.”
It was Olivia.
Her medical chart details her last moments on earth:
12:10 p.m. Mom holding infant.
12:15 p.m. Parents holding.
12:20 p.m. Dr. at bedside to pronounce.
The doctor listed the cause of death on the death certificate as “sepsis” - infection.
But the medical records also show that Olivia had MRSA, a staph infection resistant to treatment by antibiotics.
Debbie said, "My first response when I found out what it was do you not
need to tell the other mothers in here what she died from because it
was contagious?"
MRSA isn’t limited to hospitals. In early 2004 just before Olivia and
Lydia were born, MRSA became more prevalent in Charlotte, detected in
places like high school locker rooms.
And at the same time, CMC found more babies than usual had MRSA.
CMC spokesmen say the medical center responded by cleaning the NICU,
isolating infected babies to limit the spread of the infection, and
reminding nurses and doctors to use gloves and gowns when handling
babies that were known to carry the infection.
But there’s one thing the hospital was not required to do: tell the public.
Debbie now says, “If I had the right to ask their infection rates I would’ve asked to go somewhere else.”
Dr. Roger Lovell is an infectious disease expert at CMC. He says, “Right now MRSA is not state reported.”
Lovell did not treat Debbie’s twins so he can’t speak directly to their
cases. But he can and does talk about hospital infections.
Lovell concedes that doctors may not volunteer information about the
presence of hospital-based infections. But, he says, “They may give you
some general statements that MRSA has been a problem in the NICU's
throughout the United States.”
Premature infants are more vulnerable to infection than babies carried
full term. There is some research to suggest that the smaller the
infant, the more prone it is to infection. So doctors are hard-pressed
to say whether deaths like Olivia’s are preventable.
Lovell says, “It's hard to say whether someone died with the infection or because of the infection.”
Debbie’s second twin lived for almost five more months, long enough to
go home to Rutherford County. She went to the hospital there with
pneumonia and things took a turn for the worse.
Debbie says, “The doctor finally came out and he was trying to tell me
that they did all that they could do and I looked and him and said
’you're not gong to make me do this again.’ “
But she did have to go through it again.
And Lydia’s death left Debbie with what seems like a simple question:
how many babies died that year after getting infections while in the
hospital?
Answering that question proved to be anything but simple.
The 6NEWS Investigators used a statewide database, which chronicles
causes of death to identify hundreds of death certificates for infants
who died in Mecklenburg County in 2004.
Only 98 of those infants lived more than a week. Of the 98, more than a fourth had some form of infection.
But the state’s epidemiologist Dr. Jeff Engel said death certificates
are notoriously inaccurate because they’re not filled out consistently.
Dr. Engel says death certificates don’t answer the question of
mortality rates due to infection but he says hospitals know the answer.
It’s just that – in his words – “Over the years what's evolved has been a very, very protective system.”
Doctors say it’s frequently difficult to conclude whether the infection
originated in the hospital or if patients or their families brought the
infection in with them.
And it turns out there is a record that provides a clue if conditions
exist in a hospital, which might lead to the spread of infections –
conditions like bloody gloves contaminated by one patient which were
then used to touch another patient.
But these are not records readily available to the public.
The 6NEWS Investigators drove to Raleigh to the campus of the state
Department of Health and Human Services on the campus of the old
Dorothea Dix Hospital off Western Boulevard. There in the basement of
an institutional brick building you find filing cabinet after filing
cabinet with hospital inspection reports. The reports contain records
of infection control violations but they do not report infection rates.
We culled through inspection reports for 33 hospitals in the greater
Charlotte area stretching from the mountains to the South Carolina
border. Eight of the 33 hospitals – or almost a fourth – had some
infection control violation in the last seven years. But CMC’s main
hospital was not among them.
Engel told us, “I think every patient should ask their surgeon ‘what is
your infection rate for this procedure?’ … and if your surgeon doesn't
know that you should ask for a new surgeon!” he chuckles.
The notion that reporting infection rates – like many other hospital
scorecards – encourages health care providers to improve their practice
is not a new one. For thirty years the CDC has encouraged hospitals to
inform surgeons of their individual infection rates. Studies found when
surgeons learned their numbers, infection rates fell.
But hospitals are not required to report such numbers to the surgeons or to the public.
Dr. Engel says, “I think you would need new legislation to do that.”
South Carolina has already passed such legislation. And the North
Carolina Public Interest Research Group is proposing that North
Carolina follow suit.
NC PIRG’s Rob Thompson says, “We're going to be saving human lives, secondarily it’s going to be saving tons of money."
The two largest hospitals in the Charlotte market, Presbyterian and
CMC, both say they support the idea of uniform public reporting of
infection rates. The key word is uniform. Hospitals want to make sure
they’re compared fairly – not punished for treating patients who might
be more prone to infection by offering a trauma unit for example when
another hospital might not have one. But the hospitals support the idea
of reporting in principle. Dr. Stephen Wallenhaupt, the Chief Medical
Officer at Presbyterian, says, “You can only improve those things that
you measure.”