Video Transcript: Susan's Story

Susan Sheridan, MIM, MBA, Co-Founder and President, Consumers Advancing Patient Safety

(Excerpt from a video produced by the US Department of Defense and the Agency for Healthcare Research and Quality for their TeamSTEPPS� curriculum)

I want to share with you the 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 5500 newborns a year. Cal was first noted to be jaundiced through visual assessment when he was 16-and-a-half 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 he 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 were 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 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, 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 five 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 OR revealed an atypical spindle cell neoplasm, which was understood by the OR 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 sarcoma.

The report was apparently sent to the surgeon�s office, but was either filed without the surgeon�s 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 six 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, nine months of chemo, and several rounds of radiation, Pat died. Both Cal�s and Pat�s errors are examples of simple yet catastrophic system failures 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 systemwide 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.