Lisa Wattley's Story
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SUSAN’S STORY --
A NURSE FINDS HERSELF ON THE OTHER SIDE AS THE PATIENT
In December of 2006, I found a small lump behind my ear lobe. I consulted a plastic surgeon because, being a nurse, I know that they do surgery on small areas around the head and neck. Dr. Grey was a plastic surgeon at the hospital where I worked whom I knew casually. He had a great reputation – all his patients loved him. I went in for an appointment and was given a local anesthetic, but Dr. Grey was unable to remove the entire mass. He was able to get enough tissue to send off to pathology. A week later when I got the stitches out, the report came back, and it didn’t rule out spindle cell. The recommendation was for a complete excision – they needed to clear the margins. It was at this point that I began to freak out. All I could think was “Get it out – just get it out!!!”
Day surgery was scheduled for just after Christmas. I was a bit worried – I had been on the internet and read about some scary things about spindle cell. That morning I was brought to main OR at the hospital where I work. One of my three grown daughters was with me, but she wasn’t allowed to stay in the pre-op. A good friend who is also a nurse stayed with me because that is what we do for each other. Dr. Grey came in and marked on my right side. He asked “Do you want me to tell you about any complications?” I didn’t want to hear it – I kept thinking “just get it out.” Anesthesia came in and made the decision to do a general. Someone held my hand while I went to sleep – the OR nurse -- and this meant a lot to me. I told my daughters that it would be about an hour long surgery, and I’d be home by noon. My daughter, Maddie, was in the waiting room. There was no support person in there that day – this is done on a volunteer basis, and it is not always staffed.
I woke up at 1 pm (the procedure began at 8) with a horrible headache. The nurse said “If you smile, I’ll give you an ice chip.” I was very tired and not really connecting. No one said that the surgery went well or that I was doing ok. I had forgotten that my daughter had been in the waiting room the entire time. No one came out to my family during the surgery. My daughter was sitting there waiting for some news, and no one ever came out to her. She was watching everyone get their news, and no one was speaking with her. My other daughter, who is a nurse, sensed that something was wrong and came over to the hospital. People at work were starting to get worried, too – they knew that it was just taking too long.
The recovery room experience is what brings on the anger for me and my family. Dr. Grey finally came out – he told my daughters it had taken longer, was more involved, and he was being careful. He told them that my smile was shifted, and he hoped it was temporary. Maddie said that all the color seemed to drain from his face.
The nurse brought me out into the main hallway from Recovery – my daughters, girlfriend, and grandson were there, and everyone was crying. Now I knew something was really wrong. My 5 year old grandson was sticking his finger into the side of his cheek and pulling it down (sort of like a fish hook). My family later told me that they didn’t feel at all prepared for what they saw.
I was transferred to Day Recovery, and, when I tried to drink a cup of ginger ale, it poured all over me. This was when I realized that I couldn’t drink. The nurse said that I probably needed another nap. The entire time, I was thinking – Where’s Dr. Grey? I questioned whether or not I should be going home. The nurse called Dr. Grey’s office and said “Susan feels she can’t go home.” That’s when I felt I had FAILED. “Susan feels she can’t go home.” It was put on me. I was then admitted very quickly. I was taken to the general elevator where people were gawking at me – people I work with were horrified; others were just trying to be polite.
By that evening, my daughters and friends were with me, and they were very, very angry. Dr. Grey came in. He felt I would be ok – it was probably some swelling. He said that he saw the facial nerve and that he did not cut it. Later that evening a young nurse on the 3 to 11 sat on my bed, looked at me, and said “Do you know what happened to you?” She was the first one to talk about the elephant in the room.
The next morning Dr. Grey came in, and I asked if I could go home. I had seen myself in the mirror with a friend, and it was unimaginable. The entire side of my face was drooping, and my eyelid would not close. He said I could go home and didn’t talk about the eye. I asked if I should have a neuro consult, and he said that while I didn’t need it, I could if I wanted. The neurologist came in later in the day. The ombudsperson came in to talk with my daughter about the waiting room issue. Neuro couldn’t offer anything. They didn’t feel that I had had a stroke and felt that I needed to wait until the swelling went down. They didn’t mention the eye either. I went home that day – the day after surgery.
I was lucky to get two spoonfuls of anything in my mouth. I was drooling a lot, and I slept most of the day. Despite the pain meds, I had an awful headache. On Friday, Dr. Grey called to check in. He spoke with my daughter who told him that I was frustrated because I couldn’t eat. By the time I woke up, it was after 5, and I didn’t want to bother him by calling. By Saturday morning at 1 am, I awoke with the worst headache I have ever had in my life. I was desperate enough with the pain to call Dr. Grey at this ungodly hour. He told me I could take 2 pain meds. “You’re going to be ok, Susan,” he assured. At 8 am, I told my daughters to take me to the ER. I was scared and kept wondering whether I was having a stroke. It turned out that I had a dry cornea. I was given IV meds and fluids and was made comfortable. I went to CT scan to make sure I didn’t have a stroke. I spent 8 hours in the ER, but I was comfortable and felt safe. I didn’t have to eat or drink any more.
The eye doctor diagnosed corneal dryness because my eyelid wouldn’t come down, and I had to be readmitted for four days for hydration and pain control. I was surrounded by people who cared for me but just didn’t know what to do. I am single and self-supporting, so I began to stress about how and when I could go back to work. My grandson was so upset by my appearance that he wouldn’t come back to see me.
On Monday night, Dr. Grey came in to see me. He hadn’t known that I had been readmitted. He told me that the tumor results were negative. He sat with me while I cried my eyes out. I just kept asking him if I was going to be ok. I saw him again when he came in to remove my stitches. Speech and Swallow came in and helped me with eating and drinking.
I went to see a facial neurosurgeon at Mass. Eye and Ear. Dr. Grey and my primary care physician had called and advocated for me. They got my appointment moved up since my original appointment was not until March. She was very upbeat – Dr. Grey had spoken with her. She was very hopeful that I would get some, if not all, movement and sensation back. She didn’t want to operate – just wanted to wait. She was very supportive of Dr. Grey and explained to my daughter that sometimes these things just happen.
Somehow, in all of this, I knew that both the patient and physician struggle when something goes wrong. Because I am a nurse, I know firsthand how care providers are also deeply affected. I wanted to change the system, not through anger and litigation, but through awareness and education. Risk Management at my hospital gave me the MITSS DVD, and that was the first time that I realized that there was something out there for me. It was amazing to witness two people openly talking about what I was experiencing. Now, a year later, I still have facial paralysis and lots of emotional ups and downs. But, Dr. Grey and I are working together to get through this.
I have been asked what would I change and what could have been better:
- Dr. Grey would have cancelled his office hours and stayed after my surgery once the facial palsy surfaced. He would have been available to talk with me about what had happened once the anesthesia wore off.
- Nursing could have called to get support to my daughter left alone and isolated in the waiting room, long past time.
- My daughters also needed support once they knew that things didn’t go quite as planned. There should have been a quieter, more private area provided for them to take it all in.
- Everything needed to stop once a problem was detected – people needed to take it in. I couldn’t eat or drink, my face was drooping, my eyelid wouldn’t close, and I still would have been sent home if I didn’t ask. No one asked “Would you like me to call Dr. Grey?”
The physical trauma of what happened to me was bad. But it was what happened after my injury that changed my life mentally, physically, and spiritually. I felt I was a good clinician. Now, I’m an even better one. No one was there for me. It’s affected some of my work. I want clinicians to know what a difference they can make in the emotional well-being of their patients.
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TRICIA’S STORY – PART I
In September of 2005, I was 9 months pregnant. I was a healthy 33 year old woman and a pediatrician with two young children of my own. I had been a longtime patient of an OB/GYN practice and had delivered my other two children at Metropolitan Hospital through this group. My husband and I were eagerly anticipating the birth of our third baby.
On September 30th, we saw Dr. White in his office for a routine prenatal visit, where I was 3cm dilated already. That evening, I began having contractions every five minutes. My husband and I packed our bags in the car and drove to the hospital. The hospitalist OB found that I was nearly 4 cm dilated by that time. After observation, she called Dr. White and then discharged me with a diagnosis of false labor. Dr. White never bothered to speak with me. We were sent home around 1 am.
That same day, on October 1st, my water broke at home. I frantically called and spoke with Dr. Baker (another physician in the practice) as we were leaving the house. After telling me to “Hold your horses,” Dr. Baker grudgingly told me to come on in to the hospital. My husband sped from our home to the hospital in seventeen minutes, a drive that normally takes almost forty. By the time we pulled in front of the emergency entrance, I was doubled over in labor pains, barely able to breathe, with continuous contractions every minute. No one was behind the desk in the emergency room at 10:30pm. My husband finally found an off-duty orderly who was willing to put down his cigarette to get me a wheelchair and wheel me upstairs to the birthing center. There, the secretary refused to call a nurse until she could find the HIPAA papers and have me sign them, which was difficult because I was in so much pain I was unable to sit up. Even though my husband told her that we had already signed the paperwork upon our previous admission that same day, she insisted that rules were rules and no exceptions could be made until she could find her forms…..
I was finally wheeled into the triage room and hauled into a bed. Dr. Baker was nowhere in sight. Another hospitalist OB came in and set up for a fern test when it was clear even to my lay husband that amniotic fluid was all over the bed and wheelchair. Nurses were telling me not to push when I was already uncontrollably bearing down and screaming with each contraction. By the time they started to rush me in the stretcher to the delivery room, the baby was crowning in the hallway en route and my son was born at 10:59 pm there.
I was left laying in the delivery room, torn open with the placenta still inside until Dr. Baker finally arrived. When he finally sauntered in, I asked “Where were you?” and he answered “Oh, I’m not allowed to come until they call me.” He yanked the placenta out of my body so hard I bit my lip to keep from crying out. When he was sewing up the tear and at one point I exclaimed, “Ouch, that hurts! I can feel that!” he replied “Aww, that’s just the deepest one” and kept right on going. He disappeared as soon as he was done.
My baby and I were finally taken upstairs. I had no idea then that my nightmare had only just begun. Around 5am, I hemorrhaged. One minute, I felt weak, dizzy, and unable to verbalize anything other than “Somebody help me, I just don’t feel well.” The next thing I know, there was blood everywhere, spurting out of my body, blood clots the size of frying pans shooting out. I thought I was going to die. Panicky nurses and doctors rushed into the room, the crash cart was wheeled in, my baby was wheeled out. My husband was shouting “Please, somebody get Dr. Baker!” We were desperate to see a familiar face in the midst of the most frightening moment of our lives. I was being stuck everywhere for an IV, but I had no strength to flinch or even move. Another hospitalist OB came in. I was told that there would be a “procedure,” and then my legs were forced open and she shoved her entire arm into my uterus and pulled out clots. Three times. And I screamed and screamed and screamed. The pain was unbearable, and I felt like I was being raped and murdered.
Afterwards, I was summarily cleaned up and hooked up to IV fluids and Pitocin. My husband later realized and pointed out to the nurse that the expiration date on the Pitocin bag was 2 weeks overdue. No one ever came in afterwards to debrief, counsel, or even explain to me why, how, or what had happened. When my husband walked down the hall to get coffee, he was met by other new mothers at the doorways of their rooms, asking if his wife was okay after what they had heard. They were the only ones who would ever ask if I was all right. We saw Dr. Baker on his rounds the next morning. The first words out of his mouth were “Well, you doctors make the worst patients.” The second words out of his mouth were to ask if I was up for an early discharge. At that point, I couldn’t even sit up. He was defensive and completely insensitive, and made more eye contact with the chart than with me. I never saw or heard from him again.
The next morning, Dr. White rounded, and the first words out of his mouth after learning what happened were “Well, I’m really surprised you decided to leave that night.” My husband and I were stunned. When I finally found the words to say that we had come in that night expecting to stay and were instead discharged on his orders, he said “Oh, I thought you had come in looking for a sneak induction.” Dr. White then proceeded to write my discharge orders a day early and left, also never to be seen or heard from again.
On the morning of discharge, October 4th, I told the hospital staff repeatedly that my baby was very sleepy, not nursing well, and starting to vomit. He had by that point lost 10% off of his birth weight. I was told by the night nurse to “stop worrying like a pediatrician mother,” that his vomit was just a little colostrum spit up, and reassured repeatedly that he was not too sleepy, just “content.” We were booted out the door.
That afternoon, within one hour of getting home, my baby threw up yellow to drench the bassinet, and we rushed him to the pediatrician’s office. The pediatrician in the office took one look at him and sent us immediately to a children’s hospital ER. He was jaundiced, lethargic, and dehydrated. My husband and I cried as the ER staff struggled to obtain IV access, sticking his arms and legs at least half a dozen times. He was admitted to the children’s hospital that evening, a mere eight hours after being discharged from the hospital where he was born, still wearing his hospital bands. It was my 34th birthday.
My son remained hospitalized for three days, lying in an incubator, hooked up to IV fluids and phototherapy. He didn’t come home for good until he was nearly a week old, and then required almost an additional week of home phototherapy and daily home care visits until he regained his strength and weight.
Subsequent to such a horrific birth experience, I developed PTSD (post traumatic stress disorder). My family and I have suffered and continue to suffer on a daily basis and struggle to recover emotionally. The careless, uncompassionate, and utterly callous attitude of the staff and physicians at the hospital and the OB/GYN practice was atrocious. Women such as myself entrusted our lives and that of our newborn infants to their care, and they betrayed that trust.
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TRICIA’S STORY – PART II
The trauma didn’t really affect my decision to breastfeed. I had nursed my two older children, loved it, and had planned on breastfeeding this one as well.
The trauma happened five hours after he was born, and when it did happen, it was like a curtain that came down on my life, like my baby and I died. No one recognized that I was in shock, lying in the bed dazed, zoned out, and motionless. I couldn’t eat or drink anything for 12 hours after it happened. When the nurses wheeled him back into the room for me to nurse him, I numbly put him to my breast and went through the motions of nursing him. He felt like a different baby, a changeling. Although the nurses kept telling me it was normal for a newborn to be sleepy and uninterested in nursing, I know the truth in my heart that it was being in physical and psychological shock that prevented my body from producing adequate milk for him, and why he ultimately became dehydrated, lethargic, and jaundiced and required re-hospitalization at 3 days of age. As fervent a believer as I am in breastfeeding, and as experienced as I was having nursed my other two, I wish someone in the hospital had recognized the catatonic state I was in and given him a bottle of formula. I would still have gotten PTSD, but at least having my baby suffer then too wouldn’t have compounded it.
The first five months of my baby’s life (before I got help) are a virtual blank. During the day, my older two children were off to school, my husband was working, and the baby and I were alone. Initially, I thought I was coping pretty well. For the most part, no one suspected anything was wrong. I thought to myself that eventually things would just get better, that the intrusive thoughts and flashbacks I kept having would burn out. But they didn’t. I didn’t know what was wrong with me, but somehow I didn’t feel as close to this baby as I did to the other two. I dutifully nursed him every 2 to 3 hours on demand, but I rarely made any eye contact with him and dumped him in his crib as soon as he was done. Granted, I told myself, two-month-old babies do need a lot of sleep and are not very exciting, but I also thought that if it were not for the breastfeeding, I could go the whole day without interacting with him at all. The nursing chair became a place where I would nurse the baby and zone out (my therapist tells me the term is “dissociation”). I would sit there with him suckling at my breast and lose all track of time; by the time I came to, I had no idea how long I had been sitting there with him --- seconds, minutes, hours? It astounded me that at his pediatric checkups, he not only gained weight but also thrived on breastfeeding, because I thought that surely with all my negative vibes and bad karma, my milk should be sour.
At my postpartum checkup, the obstetrician told me I was just having postpartum baby blues, that it was all hormones, and that this was “Mother Nature’s way of kicking women when they are down.” At some point, however, when the baby was five months old, it finally dawned on me that what I was feeling was not normal, not getting better, and potentially interfering with my bonding with the baby and his emotional development. At that moment, I panicked. By this point I was zoning so badly that I had put post-it notes up all over the house to remind me of the times when I last fed and diaper changed the baby, because otherwise I would have no idea where or when I was.
Fortunately, I got help from a psychologist who specializes in PTSD. She saved my life. She recommended that I take an antidepressant, and initially I refused because I thought I would have to stop breastfeeding. At that point, I was afraid that if I stopped nursing him, there would be nothing to hold the baby and me together. A particular anti-depressant, I found out, however, is safe for breastfeeding and is also recommended for depression/PTSD. So thank goodness for anti-depressants. At our first working session together, my therapist taught me a technique I had never heard before, “grounding.” It means to use your five senses, she said --- sight, smell, hearing, touch, and taste. She told me to do it on my son every time I breastfed him. Although I didn’t dare tell her at the time, I thought she was absolutely nuts and that “grounding” was the kookiest, hokiest thing I had ever heard of. However, I also realized that I was not in a position to argue and I would have drunk snake oil too if she had told me to.
So that night, I went home and started “grounding” on my son. I sat in the nursing chair, put him to breast, and started by “looking” at him. All I “saw” were brief images --- an ear, some hair, his cheek. Next, smell --- he smelled like bananas and breast milk. Next, hearing --- I heard him breathing in and out and swallowing the milk as he nursed. Touch --- fine baby hair and smooth skin. Taste --- first I looked to make sure that no one was watching me and think I was crazy --- and then I licked him. He tasted like dried rice cereal and bananas stuck to his face, remnants of dinner.
repeated this scenario over and over and over again over the next several days, every time I nursed him. It gave me something to do besides zone in the nursing chair, but it was the most difficult and frustrating thing I have ever done. I would start with one of the five senses, maybe get to the second, but inevitably before I got to the third I would have zoned out and lost track of where I was. Then I would force myself to start all over. Looking at him was the most difficult, so I usually put that one last. It felt like psychological rehabilitation, and more than once I nearly broke down crying because I didn’t see the point, it was frustrating, and nothing ever seemed to change. But then I figured that nothing would be accomplished by crying anymore, so I’d get back to work grounding.
And then the miracle happened. On the fourth day of nearly nonstop grounding, I looked up at him on an afternoon when he made a sound and my heart nearly stopped. He was sitting up in his high chair, looking at me, laughing, and I don’t know how to explain this to anybody who has not been through this themselves ---- but he was there, all in one piece, all five senses suddenly merged into one complete, whole entity. And I felt bombarded all of a sudden by the world around me --- the brightness of the kitchen lights, the humming of the refrigerator, the hardness of the chair I was sitting on. It was like sensory overload, and I’ll never forget the moment as long as I live. I told my therapist that at that moment I saw my son for the very first time since he was five hours old, and he was the biggest newborn I have ever laid eyes on.
Since that day, I have continued to make slow recovery from the PTSD. Breastfeeding was probably the best thing over the long run that I did for my baby and myself. At a time when my life was a never ending replay of the horrors of his birth, and when I felt blind to and cut off from the world of sweet mother and babyhood, breastfeeding offered the only concrete connection my baby and I shared through the tumult and the only tangible evidence I had for myself as his mother. I still ground on my son every night as I nurse him to sleep --- seeing, hearing, smelling, touching, and tasting --- it has become a crucial ritual for us although I have never seen it in any baby care book, and I am sure that he is the only human baby in the world who gets licked on a nightly basis! I’m planning to let him wean at his own pace, in the meantime I keep nursing and grounding, and I hope that one day the need for both activities will fade into the past forever.
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Jane L. Martin's Story: “A Patient’s Testimonial”
At the beginning point of this journey the very thought of discussing the trauma I had experienced felt entirely beyond my capabilities. My survivalist’s instinct was to tuck the entire ordeal neatly into a far corner of my mind; or better yet to pretend it didn’t happen at all. Soon though it became apparent that that approach wasn’t working. Daily functioning became an overwhelming task. The harder I tried to forget, the more daunting everything became. Every aspect of my fairly predictable life was now a thing of the past. How was I going to deal with a world that was so foreign to me?
At the urging of my primary care physician I sought counseling as a way to attempt to put some order back in my life. I attended the first counseling session enthusiastically. I was looking forward to being instructed on exactly what steps I needed to take in order to regain control in my downward spiral. I guess I thought that somewhere there was a manual, that listed steps 1-10, sitting on the counselor’s shelf just waiting for this particular patient to use. Surely all I had to do was follow these “golden rules of recovery” and all would be well. Unfortunately, my expectations of counseling were as unrealistic as the world I was forced to live in daily. It became apparent all too quickly that my foolproof method of recovery would require a lot more hard work than I had planned on. After weeks of some emotionally charged days and nights I finally felt I was making some real progress. Dealing with the grief, anger and betrayal associated with the loss of my unborn baby at the hands of a medical community I had been taught to trust was a painstaking task, but one I had made some positive strides in addressing. I discontinued the therapy sessions some months later.
Still there were some long-term issues of which I couldn’t quite understand or put my finger on. Frequent terrifying nightmares, checking numerous times to make sure all the windows and doors were securely locked, freezing at the sound of an ambulance siren and avoidance had all become deeply ingrained. These constant fears pushed me to seek out additional resources to help me to recapture the person I had once been. Perhaps the biggest fear that motivated me was that I did not know the person I was becoming.
I began counseling anew with a therapist that by chance, and much to my good fortune had specific training in trauma. She helped and encouraged me to take control of the roller coaster that up until this point I had felt was my destiny. I gained the knowledge that I could again be in control of my future; I just needed to take the positives I did possess and work with them in the context of the trauma. The fear of being emotionally hurt again was a large factor in what had been holding me back from making any forward progress with the long-term issues. After some time I came to learn that I had already been to the worst place in my life that I ever imagined possible; there was no worse place to fear.
After having dealt somewhat with the emotional fallout of my trauma I felt the next step was to somehow connect with others who had experienced a similar situation. I began to seek out some additional resources that dealt specifically with medically induced trauma. My quest began by contacting Senator Moore’s office and requesting information about the Betsy Lehman Center. I was told that the Lehman project had had the funding cut and was not operational. I was then referred to Paula Griswold at the Massachusetts Coalition for the Prevention of Medical Errors. During a lengthy conversation with Paula she informed me about a group called MITSS, and gave me Linda Kenney’s phone number. My conversation with Linda was the first time I had actually talked with anyone who had also dealt with medical trauma. I knew immediately that becoming involved with MITSS was the next logical step to take in my recovery. Not only had Linda offered a compassionate ear, but also for the first time in the past year and a half, I was convinced that someone really understood what it felt like to undergo such an ordeal. I was very excited to be “interviewed” for the support group that was being started, and desperately hoped that I would be a good fit for the group, and likewise that the group would be a good fit for me.
After the first group meeting I instantly felt a bond with each and every person in that room, unlike any I had known before. Those bonds only continued to strengthen as we went around the table and 4 other women shared their heart rendering experiences. I received a special gift that night and at each of the following 5 meetings. That gift was validation. What I found was that the emotions I had experienced were a common thread we all shared – maybe not exactly in the same way, but just as deeply. Through the materials and knowledge that Jean Bellows so carefully shared I slowly came to know that all of the emotions and feelings that follow such as loss and/or trauma were all normal things to have felt. Some were in fact the bodies healthy way of coping with an overwhelming experience such as we all had had. I gained a better understanding of the sequelae inherent in Post Traumatic Stress Disorder and the profound effects it had on both my conscious and unconscious being. Education was provided that explained the hows and why’s of the physiological processes that occur when someone deals with trauma. She explained ways to make situations that feel uncomfortable more bearable and not so out of our control or helpless feeling. Everyone listened to each other in a non-judgmental, empathetic way. The ability to trust was an issue that I had continually struggled with. Again, I quickly came to find this just wasn’t something I had to worry about within this group. We were all in the same boat just with different oars by our sides.
Our conversations at the Tuesday night meetings encouraged and strengthened my conviction to continue the same dialogue at home. I felt empowered to talk more openly about my trauma with my husband. I had never fully understood his reactions or better yet how he was able to let it go so seemingly easily after he got over the initial shock. This had never been an easy topic of conversation to discuss with him as we both approached our grief from very different directions. That piece kept coming up time and time again and was a very painful part that up until that time was never adequately explored. I believed he “just didn’t get it.” He thought, “Why isn’t she getting over this.” What came to light after our talk was something very different and came from a prospective that I had never been attuned to. To my husband, after witnessing my being rushed to the hospital by ambulance with Advanced Life Support, being told he could not ride with me, not being given any answers when he reached the hospital, and then the worry of recovering from emergency surgery – he experienced a tremendous sense of relief and was just thankful that I was alive. To him that was the most traumatic part of our experience and when that aspect was over and he knew I would recover well physically he went on with his life. I was finally able to understand why he had reacted the way he did to our loss - something I so desperately needed to know. Being able to understand his position felt like a huge weight had been lifted from my shoulders.
Many more pieces came together for me through this support group not only through the camaraderie and encouragement, but through a deeper understanding of what Post Traumatic Stress Disorder entails, and helpful ways in which to further climb out from under it’s frightening grip.
I consider my being included in this group a godsend that helped me further along in my road to recovery. I don’t know where the next step will take me, but I hope someday soon to be able to reach out to others who are dealing with the painful aspects of Medically Induced Trauma so they too know they are not alone. I can truthfully say and feel now, with conviction, that “I will never forget, but I need not always remember”.
Sincerely,
Jane L. Martin
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By Lisa Wattley
It’s Halloween Day, 2003. A mom dresses her two boys, ages 9 months and 3, in their costumes for a visit to Grandpa, who is in the hospital due to recent exploratory surgery. As the family enters the room, 2 hospital staff members, both with masks and gloves, are assisting Grandpa. Mom wonders aloud why the staff has masks on but receives no answer. Meanwhile, the staff makes comments about how cute the grandchildren are and Grandpa seems pleased to see his boys.
Later that night, Mom receives one of those phone calls you hear about in magazine stories - one of those calls that change everything. Nana is on the line saying that Grandpa has something contagious called MRSA and that Mom should probably wash her hands after she visits with Grandpa in the future.
That mom, of course, was me. My name is Lisa Wattley and I live with my husband and two sons in Plantatation, Florida, just west of Fort Lauderdale. Grandpa was my father, William Cosentino. The episode above marked the beginning of a long and as of yet incomplete journey into the shadowy world of patient safety and infection control. I say shadowy because that’s how patient safety appears to me - some nebulous, secretive issue that is often dismissed by both the medical profession, patients and their loved ones.
To continue with our story, I spent several frantic hours that evening trying to find out about MRSA in the hopes that my two sons were safe. A nurse friend, who refused to give specifics about what MRSA could do, suggested that I call my pediatrician. The hospital nurse assigned to my father that evening also would give me little information. She did mention a small sign posted the window of my father’s room. Hadn’t we seen that?
I did eventually get the information I needed. MRSA is short for Methicillin-resistant Staphylococcus Aureus. This bacteria is sometimes called a super bug because of it’s resistance to certain types of antibiotics. Highly contagious, it can be transmitted on clothing, medical and other equipment, and can live outside the body for three hours. If this bacteria, which can remain on the skin without causing harm, somehow travels into a patient’s body (such as through a catheter or other tube), it can lead to such complications as pneumonia, blood poisoning, and bone infections. Although many healthcare providers point out that MRSA is usually only a danger to patients with a weakened immune system, MRSA has been known to infect infants, healthy adults, and even NFL football players. According to the Centers for Disease Control information sheet on MRSA for healthcare workers, “The main mode of transmission of MRSA is via hands (especially health care workers' hands) which may become contaminated by contact with a) colonized or infected patients, b) colonized or infected body sites of the personnel themselves, or c) devices, items, or environmental surfaces contaminated with body fluids containing MRSA.”
In other words, a patient is infected with MRSA most often because healthcare workers do not wash their hands when they are supposed to.
As for our family, MRSA had a devastating impact. The surgery, my father had before our fateful Halloween visit, revealed lung cancer. Our plan was to have our father at home, surrounded by those he loved, enjoying his Dunkin’ Donuts and his boxing on tv with as much comfort and love until the cancer took him from us. Instead, MRSA led to pneumonia, which led to the use of a ventilator, a tracheotomy, and a gastric feeding tube. My father never again got to hold any of his grandchildren on his lap as he sat in his recliner. He never saw his own home again. On December 21, 2003, our family made the decision to end life support for my father. The cause of death on the certificate read cancer.
Throughout the two months between my father’s initial diagnosis with MRSA and his death, I repeatedly requested information from the hospital staff without satisfactory results. I could not get beyond the cursory hand patting. “No, there was not a forum to share my experiences. We’re going to do some training in a few months. Yes, it’s tough getting staff to wash their hands.” I also observed the staff caring for my father using varying levels of infection precautions. (That’s “med speak” for what you wear and what you do to prevent carrying infection with you to other patients. Gloves, masks, hand washing would be included.) Some staff came in looking like they are from the set of that movie, “Andromeda Strain.” Others were bare handed and some even drew blood without gloves.
The information I learned on my own about infection precautions was a bit of a shock to say the least. Here are a few tidbits:
Healthcare providers only wash their hands about 50% of the time
Doctors are worse at this than nurses
It’s cheaper to prevent infections than to treat them
80,000 people die annually in the US from hospital acquired infections
Most states do not require hospitals to report infection rates
Armed with this information and what I learned on my own about MRSA, I wrote a letter to the hospital infection control specialist and copied it to the hospital board of directors, state department of health,and (JACAHO) Joint Commission on Accreditation of Healthcare Organization, which accredits the hospital.
Two days later I was called by the chief nursing officer from the hospital and a meeting was scheduled during which our experiences were reviewed. The hospital did not deny what occurred. A committee was formed to revolutionize the hand hygiene practices and mindset of the staff. (Hand hygiene is more “med speak” for cleaning your hands). This was no small project. We have been working nearing two years on what I consider to be progressive changes. I was even invited to video tape a message detailing my father’s case so that employee’s could hear from an actual victim.
I would so much like to report that things have changed, that the day to day practices of the hospital system that allowed my father to contract his infection have changed. Sadly, we recently had a family member enter the same hospital. When visiting her, I was dismayed (okay, stunned is a better word). Why didn’t healthcare workers wash their hands consistently (even after I repeatedly spoke with the charge nurses)? Where were the patient information brochures on hand washing? Where was the language in the admission papers that clearly informed the patient of her right to have all staff wash their hands? And finally, sadly, was my two years of work with the hospital in vain?
As I write this, I am awaiting a meeting with the original hospital staff regarding these issues.
I was privileged to speak with Linda Kenney recently. Thanks to hearing her shared experiences in attempting institutional change in the hospital, I was able to sleep again. (Have two years of heart wrenching work invalidated sometime and see how you cope.) Linda Kenney encouraged me to continue to work for change in the culture of the hospital in an effect to prevent future pain and grief for patients and their families.
In closing, I would like to express my gratitude to Linda and MITSS for being a sane, rational voice for patients and their family. Who said, the longest journey begins with a single step… Thanks to Linda, I am continuing this journey. With help from God and an understanding family, I hope to be able to look back on this time as one that I hope would make my father proud.
