I want to share with you this story of two very important, very real, and very loved faces in patient safety.
One, the precious young face of my newborn son, Cal, and the other the face of my late husband, Pat.
Cal was born a healthy baby boy on March 23, 1995 in a large accredited hospital that delivers over 5,500 newborns a year.
Cal was first noted to be jaundiced through visual assessment at 16 1/2 hours old, but a bilirubin test was not done.
Cal's skin was described to be jaundiced again through visual assessment when he was 23 hours old, but a bilirubin test was not done.
Cal was discharged from the hospital when he was 36 hours old and was described as having head-to-toe jaundice, but a bilirubin test was not done.
The information we received about jaundice was a simple brochure that never mentioned jaundice could cause brain damage.
We were told to put Cal in the window for sunlight, not to worry, and to call the newborn nursery or our pediatrician if there are any changes in sleeping, eating, or any other behavior.
On day four, I called the newborn nursery and told them that Cal was still yellow, lethargic and was feeding poorly.
They asked me if I was a first-time mom and then assured me there was no concern since sleepiness was to be expected.
They told me to unwrap him and tickle his feet, and if that didn't work, to call the pediatrician.
We immediately took Cal to the pediatrician, and he noted the jaundice by visual assessment. Again, a bilirubin test was not done.
We were told to wait 24 hours to see if he would improve. We continued to call the pediatrician throughout the next 24 hours, reporting that our child was changing before our eyes.
Yet, we were repeatedly told not to worry and to wait for 24 hours.
At 5 days of age, the pediatrician admitted Cal to the pediatric unit.
Cal's bilirubin was tested for the first time, and it was one of the highest recorded bilirubin levels at the hospital.
Treatment was limited to phototherapy. Again, we were told not to worry.
A resident did Cal's history and physical upon admission, and due to confusing chart entries, documented the wrong blood type for Cal.
A blood incompatibility was ruled out.
We later found out that Cal's jaundice was due to a common blood incompatibility and was very easy to treat.
On day six in the afternoon, Cal had a high-pitched cry, respiratory distress, increased tone, and he started to arch his neck and back.
These behaviors were all acute symptoms of kernicterus, or brain damage from jaundice.
Again, we reported the unusual behavior to the providers and staff, and again, we were told not to worry.
Cal was later diagnosed with classic, textbook kernicterus.
Cal has athetoid cerebral palsy throughout his entire body, neurosensory hearing loss, enamel dysplasia on his front teeth, crossed eyes, and other abnormalities.
Today, Cal cannot walk independently, his speech is impaired, he drools, and he has uncontrollable movements of his arms and legs.
In 1999, my husband, Patrick, who was the face of panache, ambition, confidence, and strength, also suffered a medical error.
It was discovered that Pat had a mass in his cervical spine, and because of the size, shape and behavior of the mass, it was thought to be a slow-growing benign tumor.
With the help of our local referring doctor, Pat and I sought out the best neurosurgeon in the nation.
The tumor was surgically removed, and a frozen section was sent to pathology.
A phone call from pathology to the O.R. revealed an atypical spindle cell neoplasm, which was understood by the O.R. team to be benign.
The pathologist, however, believed it to be very suspicious and ordered more stains to further define the tumor.
Twenty-one days after the date of surgery, a final pathology report was issued as a malignant synovial cell carcinoma.
The report was apparently sent to the surgeon's office but was either filed without the surgeon ever seeing it, got lost, or was misplaced.
The cancer was never communicated to Pat, our local referring doctor, or me, and it went untreated for 6 months.
Pat's neck pain returned.
So we went back to the neurosurgeon to find that the tumor had grown to the size of the surgeon's fist, had spread, and had invaded his spinal cord.
Upon removal and a pathology, it was again diagnosed as a sarcoma.
Pat's chances to survive his cancer were reduced dramatically by the communication failure.
After seven surgeries,9 months of chemo and several rounds of radiation, Pat died.
Both Cal's and Pat's errors are examples of simple, yet catastrophic systems failure due to communication breakdowns and uncoordinated teamwork.
Cal went through several layers of the health care system, and each layer failed to stop the succession of error.
There was a system-wide failure to include Pat and me in Cal's care.
This was not any one individual's failure, but at any point one individual could have made a difference by stopping the systemic failure before it reached its tragic conclusion.
What if a genuine culture of safety that practiced a systems-based approach had been in place?
What if our concerns as parents were taken seriously, and we were asked to work in partnership with Cal's providers to help identify jaundice symptoms?
We, parents, patients, and family members can be additional eyes and ears to spot symptoms.
We could be an extra resource to see, feel, recognize, and report changes and concerns.
What if the pathologist had given the surgeon a head's up, that Pat's tumor was suspicious and that they had ordered additional tests?
Or, if someone had contacted the neurosurgeon to ensure the receipt of the malignant pathology results?
Or, what if the pathologist and the neurosurgeon understood the phrase atypical spindle cell neoplasm to mean the same thing?
As a family, we are profoundly let down by the very system that we once trusted implicitly.
With this in mind, I ask you to never give up on patient safety.
Seize it with relentless passion, and embrace it with urgency, honor, and hope.
While there may be barriers, patient safety cannot wait.
I know from my own efforts each individual can and does make a difference.
And, I must say that I have witnessed progress, promise, and the power of partnerships since the errors in my family occurred.
I have had the honor of being part of some robust patient safety initiatives that are making a difference.
PICK (Parents of Infants and Children with Kernicterus) formed by a group of moms and dedicated to the eradication of kernicterus.
CAPS (Consumers Advancing Patient Safety) whose mission is to help create a health care system that is safe, compassionate and just.
And, W-H-O, the World Health Organization, which identifies the patient as the core of their newly launched world alliance for patience safety and is dedicated to creating the collective voice of the global consumer in areas such as patient safety, solutions, reporting, and research.
These initiatives are all harnessing the passion, the hard-won knowledge, and the spirit of the consumer to work in partnership with health care agencies, professional organizations, providers, accreditors, and the insurance industry.
Your spoken word, your courage to challenge, your will to engage in teamwork, and your determination to ensure no harm can all be pivotal in determining if a patient lives or dies.
You have a powerful opportunity to revolutionize patient safety by re-creating how health care is delivered as a team, as a system, as a champion.
You are the frontline. You are the decisionmakers. You are our partners.
You are not just an individual working in isolation but the pillar and the cornerstone in patient safety.
Ask yourself, "How can I be part of the transformation of health care and patient safety?"
Because working in partnership with each other, your coworkers, and your patients, we can make a difference so that daddies and babies and other precious family members and friends are safe from harm.
Thank you.