Happy Birthday William Ellis Greenbaum 01-30-99 to 01-30-99

It was a typical cold and rainy winter's day in January 1999. I was living in Seattle at the time. The festivities of the holiday season had come and gone, but for many reasons, my family had very little to celebrate that year. My grandfather on my mother's side had just passed away a couple of weeks prior after losing his grueling battle to melanoma. My mother had not only been visiting from California to spend her last Christmas with her father, but also to support me through a very difficult first pregnancy. It was a Thursday afternoon and together with my mom, I headed to the University of Washington Medical Center for a doctor appointment. At this point, it was almost as if I was living at the medical center as I was going back and forth for various reasons on a nearly daily basis for anything and everything from routine exams, specialized tests and procedures to emergency room care.


I found out I was pregnant in August of 1998. I was over the moon as I stared at the pregnancy test stick, hardly believing my eyes as I watched it turned from white to pink, to darker pink! David and I had been married for just about 3 years, and an addition to our family was always in the back of my mind, but because of the condition I was born with, getting pregnant and then carrying a baby to term was venturing into uncharted territories, not only for me, but for the posse of doctors I had grown up seeing. Its not that women with my same condition had not had successful pregnancies in the past, but I didn't know of any, at that time.


Bladder Exstrophy mainly effects one's urinary tract system (bladder, kidneys, ureters), but in most cases the reproductive system is also impacted. The degree to which it is impacted greatly varies from individual to individual. In my case, I was born with an abnormally shaped uterus, specifically termed a "bicornuate uterus" or a heart shaped uterus. I also had a septum in the middle which is a piece of abnormal tissue that compromises the integrity of the uterus, complicating my ability to carry a pregnancy by potentially limiting fetal growth and causing pre-term labor. My pelvis was also abnormal from birth which required a surgery at 6 months old, at which time, my pelvis was purposely broken, then re-set so that I would be able to walk normally. In addition, I was at much greater risk of developing urinary tract infections of both the bladder and the kidneys and because of the numerous abdominal surgeries I had undergone throughout my childhood into young adulthood, my abdominal wall lacked strength as all the muscle had been cut through numerous times.


Most people probably wouldn't have attempted something as risky as pregnancy was for me, but all I can say in response is that I knew then, just as I know now, that I already had children just waiting to be born, waiting in the place where all souls can be found until their time comes to join their families. I am as certain of this as anything. In retrospect, I suppose that some people would say I was being selfish in making this choice, as risky as it was, but as it turned out, the multitude of problems I experienced resulting in Williams death came out of a combination of things that were 100% avoidable. First, there was my misappropriated faith in that doctors know everything about everything including all the complexities of my own body. I permitted all the doctors involved in my care to dictate to me what certain symptoms meant even when my instincts screamed at me, otherwise. Although, I truly believe that all were well-meaning and well intentioned, several very poor choices, including recommendations that lead to certain treatments with my care, were made by my "care team" with catastrophic consequences. I was angry and bitter about this for a very long time after, but I have forgiven what has happened and rather decided to search for the lessons and opportunities for growth that lie within the pain of it all instead of remaining in the grips of "why me, why William?". I was equally, if not more, disappointed and angry at myself for essentially ignoring my instincts and allowing things to happen to me and to William that I knew were not right- this is the most difficult part for me to get past and to forgive as I feel partially responsible for him not being here with me today, but self-forgiveness is crucial to ones healing and so I try to permit myself the same latitude knowing that at the time, I thought I was doing the right thing.


From the beginning, there were problems. Just like any newly first time pregnant woman, I had no idea of what to expect. I didn't know what I was going to feel, what I was supposed to feel- whether this ache was normal, or that pain indicated something was wrong- I wasn't sure of the subtle and not so subtle changes my body was and would continuously be going through beyond the obvious- I just didn't know. And so in my ignorance, I began to assume the worst whenever I felt something I had never felt before. I often attributed whatever it was to something bad rather than to something normal and to be expected. This anxiety was fear driven. Even though, I deliberately chose to take this path, at the time, I did not realize that all the voices of uncertainty and disapproval I had been bombarded by over the years on the subject, had taken up residence in my head without my consent and began to negatively effect all that I was feeling, both physically, then emotionally. Complicating and confusing matters even more, was the validation I was receiving that what I was feeling was NOT normal, when to the contrary, it was normal for me, I later found out with my two subsequent pregnancies.


Before I go into the details of what lead up to clearly, the single most painful experience, both physically and emotionally of my entire existence, let me preface the following events by stating that I returned to the University of Washington Medical Center for my obstetric care because I had previously received such outstanding treatment within its walls over the years through the correction of my birth condition. If not for some very special doctors and nurses and cutting edge technology and research, my life would have been, without a doubt, very different from what it has become. The University of Washington is a teaching hospital. In my experience, this fact is both a blessing and a curse all at the same time. As with any teaching hospital, the latest research is being conducted; the newest technologies are being investigated, developed and implemented, some with great success, as with my case. The downside of a receiving care in a teaching hospital is that often times, ones care and treatment is being directly managed by newly charged, inexperienced residents. While an attending physician is theoretically responsible for overseeing the actions of the residents involved, there is much room for important details to go unnoticed, unobserved, unmonitored and unchecked. Further compromising the care I received, was the fact that as semesters ended and a new ones began; as rotations were completed and residents were reassigned elsewhere, I found myself seeing someone new for almost every appointment I had. Because of the lack of continuity in my case, many nuances of my pregnancy were lost in translation as my chart was passed from resident to resident just as often as a football is on Super Bowl Sunday.


My first such pass came merely 6 weeks into my pregnancy. Most women first see their OB between 9-12 weeks into their pregnancies if they do not have any risk factors which would indicate seeing their OB sooner. My first doctor visit came immediately upon confirmation of a positive pregnancy test. By the time I was 6 weeks along, I had already been to the doctor a couple of times which was followed by referrals to other specialists, adding their perspectives and interpretations to the mix, marking the beginning of my proverbial pregnancy kitchen getting increasingly crowded.


Many unfortunate events transpired from my 6th week of pregnancy through the end of my 25th week of pregnancy which is the point at which I began Williams story that Thursday afternoon In January 1999. Without touching on every horrific detail, I will simply paint the broad strokes now. I experienced many aches and pains from the first few weeks. Given my predisposition for increased urinary tract infections, my doctors interpreted my symptoms as deriving from pylonephritis (a kidney infection). Having a kidney infection, even in a non pregnant individual, is a dangerous prospect and never to be treated lightly. My infection(s) was never definitively confirmed, but the treatment I received was based on it being so. I was given very high dosages of very strong antibiotics which continued throughout the pregnancy. The symptoms I was feeling were never alleviated so more drastic measures in the form of more invasive treatments were commenced. In my 14th week of pregnancy, I ruptured my amniotic membranes which meant that I lost all my amniotic fluid. This was directly correlated to being on a high, continuous dosages of antibiotics which can weaken membranes. Having adequate amniotic fluid is critical for a baby to develop normally, specifically their lung development. After this occurred, David and I were referred to a neonatologist which informed us of the grim statistics we were facing. We were told that A) I would most likely have a miscarriage within a few days- never happened. B) that if I made it past the point of fetal viability, the baby had virtually no chance of survival C) If he did survive, he would be severely handicapped. We were advised to terminate at that point.


After many heart to heart discussions with David, we agreed to let nature take its course and hold on to hope that miracles are possible. The good news was that I didn't miscarry as they predicted. Despite the lack of fluid, William continued to grow and do well considering the circumstances. I was put on bed-rest and strictly adhered to it. My fluid began to accumulate once again and it appeared the the rupture had sealed itself. At a subsequent doctor appointment, I was told that I could now go off of bed rest. It was around Christmas time and my grandfather was deteriorating quickly. If there is one moment I could take back, it would be this: I resumed normal activities and pushed myself to do some Christmas shopping. I entered a Target store with my mom and brother and 4 year old step-daughter Samantha. We grabbed a cart. Samantha wanted to sit in the cart. Without thinking, I picked her up- Pop! I felt something pop and I gushed fluid immediately. I had re ruptured in that split second. Why I wasn't home in bed resting, despite the doctors orders, I have asked myself that 100 million times. I will always regret this split second life altering decision for the remainder of my life.


From that point on, the pregnancy deteriorated rapidly. My amniotic fluid never accumulated after that; the rupture never healed. My symptoms became increasingly worse. I was hospitalized several times. I had to have stints put in my ureters which is pure misery and caused me total incontinence. I hemorrhaged. I continued on high doses of antibiotics and narcotic pain medication. I was diagnosed with placenta previa which is where the placenta doesn't move up along the uterine wall as it should and blocks the cervix. This can be very dangerous during vaginal delivery. Even through all of this, my little William stayed put and continued to grow. As my mom and I entered the medical center for what was supposed to be yet another ultrasound to check my fluid levels, I couldn't have imagined in my worst nightmare, the events that were about to transpire.


At the conclusion of the the ultrasound, the tech asked us to wait in the exam room for a few moments. I was informed that the doctor wanted to see me about the results. The ultrasound showed that I was at great risk for hemorrhaging which was very dangerous. She advised me that I needed to be hospitalized immediately for the remainder of my pregnancy. I asked her if I could go home and pack some personal items and settle a few things before returning to the hospital that evening. She begrudgingly agreed, but warned me to get back to hospital as quick as I could.


My mother and I headed to my home. I called David to let him know all that had happened at the doctor appointment. He came home to help me prepare for the imminent hospital stay. Before he was to take me to the hospital, I asked him to run out to one of my favorite restaurants to pick up a "last meal" of sorts. The restaurant was 1/2 block from where we lived, but in the few minutes that he was gone, I began to hemorrhage profusely. My mother called 911 and I was taken to the University of Washington Medical Center by ambulance before David arrived back home. Earlier that day, after learning of the hospitalization, my mom decided that she was going to return home to California to get a few things done so she could return and help David out with Zach and Samantha while I was in the hospital. She left the next morning and was to return on Sunday.


I was admitted and they were able to stop the bleeding, but I had gone into premature labor. I was given high doses of magnesium sulfate which essentially paralyzes involuntary muscles like your uterus. I was barely able to move or speak and unless you've ever been on this medication yourself, its impossible for me to convey how horrible an experience it is. I was on this medication for 1 1/2 days, unable to move, hardly able to speak. On Saturday morning, January 30th, I was lying in bed and I felt strong contractions that were getting worse and more frequent. I was alone at this point. I tried to solicit help, but I couldn't reach out for the nurses button. Finally, a nurse did come in to check on me. I Told her what was going on. Within minutes, I was being wheeled into the operating room for an emergency c-section.


As I slowly woke up from the anesthesia, I remember being pushed by the incubator that William lay in. He was 1 3/4 lbs and 13 inches long. You can't imagine what a baby that size looks like in person, but even though he was hooked up to all these tubes and wires, with bells and whistles going off constantly, I stared at him and all I could see was this absolutely perfect, beautiful little baby boy. I wanted to touch him, kiss him, hold him, stroke his tiny little head and cheek and let him know I was here, that he was going to be okay, but I couldn't. I couldn't do anything, but love him from a distance.


What seemed like an eternity later, the neonatologist entered my room. David was there along with our immediate family members. My mother had not returned to Seattle as of that point. Her flight was scheduled for the following day. The neonatologists informed us that Williams lungs were severely immature and underdeveloped to the point that he could not survive without life support. He would never recover and eventually, would pass away- probably within a few hours. We were given the impossible choice of keeping him on life support until he passed on his own or removing him from all the tubes and wires and holding him for those few minutes he would live. I can't even think of this without tears streaming down my cheeks. David and I mutually decided to remove him from life support. With our immediate family surrounding us, they brought my beautiful baby boy into the room and placed him in my arms. His piercing blue eyes looking into mine. We held him and loved him in those few moments as deeply and as fiercely as we could- trying to transfer all of our love, hopes, dreams, thoughts, feelings straight to his heart, hoping and wishing that in that moment he knew how loved he was and how much he always would be. At some point, he passed away and the rest is quite blurry. You'd think that this was bad enough, but it gets worse.


Later that evening, after all the family had left for the evening, I began having trouble breathing. I remember calling out for help and the rest I don't remember. I had developed sepsis- this is when an infection enters into your blood stream. as a result of the sepsis, I then developed Adult Respiratory Distress Syndrome (ARDS). When I had ruptured my amniotic membranes weeks earlier, an infection began to take hold and got worse over time. The infection is what triggered the pre-term labor. The magnesium sulfate I was given caused my lungs to fill up with fluid. I was in very bad shape. I was immediately intubated (put on a ventilator) and placed into a drug induced coma for several days. They were having a very difficult time determining the source of the massive infection. I wasn't showing any signs of improvement and in fact, was getting worse and was close to death.


The doctors wanted to do a complete hysterectomy as they felt the infection was in my uterus. David pleaded with them to hold off one more day before performing the hysterectomy. Some of you may be wondering why he would do this in a life or death situation. Anyone who knew me then, would know that he was carrying out my wishes and that I would have been beyond devastated if I had woken up to a hysterectomy. The gratitude I feel for him for pushing this issue is immeasurable. He later told me that he knew I would be okay and if he felt anything other than that, he would have approved the surgery. The following day, I began showing improvement and the infection began to clear. I was in a coma and on a ventilator for a total of 9 days. Regaining consciousness took several more days including going through a phenomenon known as ICU Psychosis which is a tale for another time. I also had to go through both physical and occupational therapy for a period of days and still have some issues with long term memory, but all in all, I have made a full recovery.


Once I was well enough for discharge which was 21 days after the date I was initially admitted, I was counseled to never attempt pregnancy again. I spent a lot of time researching what had happened after I went home. I consulted with other doctors and eventually concluded that what had happened to myself and to William was an unfortunate chain of isolated events brought on by the mismanagement of my care which led to incorrect diagnosis' which led to treatment I didn't need which led to everything else, all of which was avoidable. With that knowledge, I set out once again to bring home my waiting babies. I chose a different perinatologist (high risk OB) affiliated with a different medical center. Ben came home first in Feb 2001, then Mackenzie 7 1/2 years later in August 2008. Both pregnancies were high risk, but even so, they both went fairly well and shared nothing in common with my first experience. Both my children are completely healthy with no issues related to my respective pregnancies, whatsoever.

Thanks for taking the time to read his story.

I love you William <3