New research showing medical errors are now the third leading cause of death in the U.S.
These errors include everything from bad doctors to more systemic issues such as communication breakdowns when patients are handed off from one department to another.
Martin Makary, a professor of surgery at the Johns Hopkins University School of Medicine who led the research, said in an interview that “it boils down to people dying from the care that they receive rather than the disease for which they are seeking care.”
I spent almost four months in the hospital in 1983 prior to the day my baby was born. Before this, I trusted doctors and nurses as any layman would. It wasn’t until week nineteen of my pregnancy that I knew something was wrong. After having an unnecessary surgery at twenty-weeks gestation to remove a kidney stone that never even existed, I began having two-minute long contractions every two minutes at the twenty-three week mark. This was caused by the needless surgery that irritated my uterus. And after trying two different medications to stop the contractions — one of which caused PVCs (Premature Ventricular Contractions) — the doctor called for alcohol therapy. Alcohol is administered through the veins, it makes you drunk, and the contractions are supposed to stop. My nurse said out loud, “Doctor, we haven’t had protocol for alcohol therapy in this hospital in twenty years!” which gave me total confidence in my doctor, of course. It was then that the nurse became my friend.
After about a week, I was discharged to a hospital bed at home. I returned to the emergency room a few days later with more two-minute apart contractions and was sent to labor and delivery again for another three days or so. During that time I was given an ultrasound, where it was determined that my fibroid tumor had grown with the hormones of pregnancy and impacted in my pelvic region, mimicking the pain of a kidney stone and causing hydronephrosis.
Fast forward to week twenty-eight, after several weeks and over thirty admissions to Labor and Delivery. My Visiting Nurse, who came to check on me every other day, was very concerned when she took a blood pressure reading of 175/112 and immediately called my ob/gyn, who admitted me back into the hospital. I stayed until my blood pressure was lowered by medication. At week thirty-two, I was tested to see if my baby was growing. She was not, due to my high blood pressure, which prevented nourishment to the placenta. I had an emergency C-section, and my two-pound six-ounce baby was born with Respiratory Distress Syndrome.
Amy was sent directly to NICU (Neonatal Intensive Care Unit) and placed on a ventilator, while I was sent to ICU, for fear I might have a heart attack or stroke because my blood pressure had spiked even higher. Amy spent six weeks in NICU with hardly any problems except for the fact that the nurses were taking care of the more seriously ill preemies and ignoring her. I was called numerous times in the middle of the night by caring nurses who let me know that “baby girl Colman” was being taken care of by a “floating nurse” from another floor who had neither gavaged (my milk was given through a tube in her nose) nor even taken care of a baby before. On those frightening occasions, I would rush to the hospital and sit by her side no matter the time of night.
Before going to see her each morning, I always made a call to speak with the nurse on duty for a status report. One day — and this might go down in my journal as the worst day of my life — I made my morning call just to be told that “Baby Girl Colman” was in surgery, and I would be called at its conclusion. How could this be? Amy was a thriving preemie, and there was no reason for her to be having surgery! I asked the nurse over and over again if she was sure that this was my baby and not another baby. She assured me it was. Panicking, I demanded to talk to the charge nurse, who confirmed the surgery. I rushed down to Cedars Sinai Medical Center to find that my baby was missing from her isolette and her room! I began crying hysterically and didn’t stop even after a nurse explained to me that Amy had been moved to a different room because she had been improving so well.
Another time I came to visit, there was a urine bag taped to her vagina. I asked why and was told by the nurse that they were conducting a study to find out the effects of antibiotics on renal function. Again, how could this be? I wasn’t informed of any study. The nurse told me that the doctor who was in charge of the study told her that he had called me and asked my permission. That was a lie! Had he perhaps called my husband? No, because Jon would have consulted me first. And just then, he walked in and was as baffled as I was. At that point, I demanded to speak with the director of the NICU. He apologized but then asked me if they could keep the study going for just another twenty-four hours. I didn’t allow it because I was very concerned about the weeping wounds already present from the silk tape.
Amy came home at thirty-eight weeks gestation. Still very small, she weighed just under four pounds. At some point during the next two months, we received a letter from Cedars informing us that “Baby Girl Colman” was given two baby units of blood and asking us if we would please replenish their bank. Jon and I looked at each other in disbelief. We remembered the day very well that Amy’s pediatrician asked us in the NICU about our blood types. She had wanted to know which one of us was A Positive because Amy’s hematocrit was getting low, and she might need blood soon. As Jon was A Positive, he was to be Amy’s donor. Therefore, this letter didn’t make any sense to us because we were never told that she even needed the blood that Jon gave. Did this mean she received someone else’s blood or was this a mistake? I called immediately only to be told that yes, she was given blood from an unknown donor. This was another terrible day. Cedars has their own blood bank, and the donors are from the community around the hospital that is predominantly gay, and this was 1983 in the midst of the AIDS crisis. There wasn’t blood screening yet!
At this point I was unwilling to have her tested because the diagnosis of AIDS would be a death sentence. How could I live with the knowledge that she had contracted AIDS and would die? But on the other hand, how could I not test her? I was too afraid to find out and decided to live with the unknown. But every single time she came down with a common cold, I was frozen with fear. Is this AIDS? Is this what is called a “failure to thrive baby?” And to make matters worse, with almost every little virus, she developed thrush, a common opportunistic infection in people with HIV.
And then one night in 1987, it got a lot worse. We received a call from the preschool director telling us that Amy was not to come to school the next day. A parent had mentioned that Amy received a “tainted” blood transfusion from the Cedars Sinai Medical Center’s blood bank and likely had AIDS. We were told that she could not come back to school until we had her tested and could prove she was negative for AIDS. This is a story in itself that I will save for another time because it is too complicated an ordeal to be included here. However, I will say that Amy self-tested at the age of sixteen, and it was confirmed that she was negative for AIDS and Hepatitis C.
In 1989, when I was pregnant with my second child, I was advised by many doctors that the same complications could (and most likely would) arise again. After all, I never had a myomectomy (surgery to remove the fibroid tumor). And sure enough, the contractions — the same two-minute apart, two-minute-long contractions recurred. This time there was no option of a hospital bed at home; the baby had dropped so low in the uterus that I was told that it was dangerous for me to be mobile. From this early stage in my pregnancy until my baby was ready to be delivered, I was to stay in the hospital hooked up to IV fluids and restricted to a bed pan. This was different from the first time because I had a five-year-old daughter at home, and not only did I miss her, I didn’t want for her to become jealous of the new baby before she even arrived. I decided to go home every weekend and sign a release form that I was leaving at my own risk.
At thirty-five weeks gestation, I woke up to find a herpes lesion. This is apparently common during pregnancy and wasn’t a concern until later that evening when my water broke. Now it was a full-blown emergency. Because of concern that the infection had a path to travel to the baby and cause brain damage, Olivia was born — all four-and-a-half-pounds of her — through another emergency C-section. She was immediately transferred to an isolation room for fear that any infection she might have could spread to other healthy newborns.
We had one peaceful, lovely day until all hell broke loose. That morning, while she was in my arms nursing for the first and only time, I looked down and saw that her ear was purple and dusky. Frozen with fear, I told the nurse who was standing beside my bed. She immediately rushed my baby, who was not breathing, out of the room while spanking her to force her to breathe. I laid there in fear and disbelief. A few minutes later, the nurse returned with Olivia and the news that she had an apnea episode (the same thing that happens in Sudden Infant Death syndrome),but Olivia was alive. What followed was a spinal tap and several other tests to determine if her apnea was related to a brain infection.
Having gone through the nightmares of the NICU with Amy five and a half years before, I knew that I needed to be proactive if my new baby girl was to survive. I told my nurse that I wasn’t comfortable with Olivia being in isolation. I asked for either a full-time nurse or a monitor to be placed underneath her, as they do with the babies in the NICU. Ultimately, the answer was “No.” It was explained that with only one episode of apnea, there wasn’t protocol at the hospital for a monitor. This was absolutely incredible! Common sense should follow that any baby — let alone a sick one — shouldn’t be left in a room alone! So less than two days after my own surgery, I had to work diligently — more so than ever before in my life — in order for the hospital to agree to a monitor placed underneath my tiny baby daughter. The next morning, the chief resident entered my room and asked me what all the “fuss” was about.” After going through every detail of my pregnancy and past birth experience with Amy and begging for a monitor, his answer was a firm “No.” He said that it just wasn’t hospital practice, and he wasn’t about to make any exceptions. I screamed “ My baby needs a monitor or she will die!” and “Get out of my goddamn room!” and asked a nurse to contact our pediatrician. Later I was informed that even the pediatrician rejected my request for what I considered essential, and of course I found a new pediatrician. After jumping through several hurdles, another day passed, and it was then that I was told they would honor my request.
While walking down the hospital corridor on my way to see Olivia to make sure the monitor was, in fact, in place, I saw a huge commotion through her open door. There were literally four hospital employees — a doctor and three nurses — inside her small room, bending over her. The monitor’s alarm had sounded because she was in the midst of her second apnea episode and was crying from the impact of the eight hands striking her, eager for her to breathe again. Olivia would not be alive today if I had not been strong and continued a fight to change the hospital protocol.
After reading my story, I hope you will understand how important it is to believe in yourself and stop giving up all your control to your doctors and hospital staff. Be in charge of your own body and those of your loved ones because no one cares quite the same way you do. I believe that everyone needs to find an advocate — a liaison between the doctors, nurses and you — in case you are too ill to take care of these issues yourself. Someone needs to ensure you are given the proper medicine — the one designated for you, not for someone else. Someone needs to check your chart to make sure you haven’t already been given that medicine or wheeled into X-ray for that test you had just five minutes earlier. And if you don’t understand a procedure that is to be performed, inquire about it until you are sure you do understand. There are too many unnecessary tests being done every day. Make sure you check to see if you have options. Make sure you are always aware of everything around you because as you can see from reading this story, my daughters needed my total participation and involvement.
“What doesn’t kill us gives us something new to write about.” — Julie Wright