Afterthoughts - Rebuilding Trust While Navigating Our "New Norm"

Hosted by Erica Jolene | Transcription HERE


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In this week's first "Afterthoughts" episode, I get vulnerable. I share details of how my trust was broken and how Dr. Tanios helped me to regain that trust. I share all this with the hope of helping other women in similar situations. The truths of the challenges women face in feeling heard in regards to their healthcare, it needs to be voiced and needs to be heard. I stress the importance of trust and communication in the doctor/patient/family relationship, in addition to the grace we must give our healthcare workers when things really are out of their hands.


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Episode Transcription


Welcome to Atypical Truth, a podcast community for those impacted by disabilities and complex medical conditions. I am your host, Erica Jolene.


This is our first ever “afterthoughts” episode. I plan to have one of these every other week, following each interview episode. These interviews were recorded at least a month or more prior to being published, so this has given me plenty of time to marinate my thoughts and the feelings I was left with after each conversation. This also gives me an opportunity to discuss current events as they relate to the previously aired interview. Just a fair warning, these “afterthoughts” episodes might contain some adult language every now and again. It wouldn’t be authentic if I attempted to refrain completely.


After last week’s episode with Dr. Tanios, I bet you can all understand why I stated that she is one of my favorite people in the world, truly. She spoke to the importance of establishing trust with patients and their families, and I have to say, that is what truly sets her apart for us.


In previous episodes, I have spoken to my feelings of distrust, feelings guarded, and communication issues with other hospitals. I feel like it is only fair to maybe explain a little about that to my listeners, because I think I am not alone in experiencing these issues.


I want to share with you a bit about the events leading up to meeting Dr. Tanios as an example of how my trust was broken and regained. I do feel that it is necessary to provide a trigger warning because I will be detailing traumatic events that occurred during Margot’s birth and the days that followed. I have left out the names of the individuals who were involved in the treatment and care of our daughter, however, many of you who know us personally and you are aware of where we gave birth. So I feel that it is important to note that the doctors involved in our daughter’s inpatient neonatal care are no longer affiliated with that hospital. I have also been told that the hospital has since made many changes in their policies and upgrades to the neonatal care unit to ensure that these events can be avoided.


Before I begin to share this story, I first want to take this time to thank those who helped us advocate for our daughter. Thank you to Courtney & Kathryn McMurphy, my aunt Sharon and cousin Jen, and our amazing pediatrician Dr. Bleichner, - thank you all for helping us by providing unwavering support and advice on how to best advocate from the perspective of medical professionals. Thank you to our friends and family who visited us in the hospital, to comfort and console us, only to end up sitting silently, crying with us through our grief. Thank you to our friends and family, near and far, who sent out countless texts, made many phone calls, and continue to show support for our family to this very day. We have one helluva village, and I am grateful for it every single day.


And so we begin….


The World Health Organization estimates that 830 women die every day from preventable causes related to pregnancy and childbirth. Let that number sink in for a minute - 830 women every day.


Research has shown that women, especially marginalized women, are often dismissed when it comes to their healthcare needs. Women residing in the United States are the most likely to die from complications related to pregnancy or childbirth. According to the WHO, there are currently 19 deaths for every 100,000 live births and 5.614 infant deaths per every 1000 births in the US. In 2016 a study performed by Doris Chou, medical officer at the World Health Organization, found that low-income and marginalized women faced an even higher risk of death during pregnancy and childbirth, even in the wealthiest of countries. Given the experience I had when birthing Margot, these numbers and this information does not seem as shocking to me. As a disabled woman who was on medicaid at the time of Margot’s birth, I genuinely felt like my experience was vastly different from my able-bodied and privately insured friends who gave birth in the same hospital around the same time.


And now, I am ready to share my story.

With Margot stuck in my birth canal, I pushed and I pushed for 4 hours. That should have never been allowed, intervention should have happened sooner. Forceps were eventually used to help deliver my daughter. I instinctively knew that something was wrong.


Margot didn’t cry. Margot had zero muscle tone. Margot failed her newborn APGAR test. Still, no one said a thing to us, no one seemed concerned.


Moments after she was placed in my arms, I knew something felt wrong. What an awful feeling for a new mother to have to experience. But I knew, I knew instinctively that she was struggling.


I repeatedly told the nurses and doctors at our local hospital that she was having seizures, I even explained that I used to work as a CNA in a pediatric hospital and that I was trained to know what infantile seizures looked like because I had cared for patients with them before. Still, they dismissed my concerns and kept ensuring me that these were normal newborn baby movements.


When I finally got the attention of the neonatal hospitalist, a full 24 hours after she had been born, he took one quick look at her and dismissed my concerns. He proceeded to walk out of the room. Although you never want your child to have a terrible seizure, at that moment I prayed that she would.


And wouldn’t you know it, the moment he stepped out of the room, she went into (what I now know to be) a grand mal tonic-clonic seizure. He quickly saw the error in his judgment and proceeded to order an EEG, bloodwork, and MRI imaging. But the nightmare didn’t end there...the tests confirmed seizures, but they couldn’t tell us why these seizures were occurring without the results from MRI images.


Where were those dang MRI images…?


You see, we were approaching a holiday weekend, the doctors rotated shifts, we had no idea who was now overseeing the care of our child. For 3 full days, we waited patiently for news, asking every day if the results from the MRI images had returned. And every day, we were told, “not yet”. They never came, there was no investigation, there was no incentive to look for them, and there was no explanation; yet our daughter laid there continuing to struggle, fighting for her life seizure after seizure every few minutes. This just didn’t make sense to me. I knew better. I knew something was wrong...I had witnessed animals receive faster results than what we were being given!


On the third day of no answers, my husband and I were feeling defeated by exhaustion, stress, fear, and frustration. We had reached our breaking point, our threshold for patience had been maxed out. Through the support and advice of our friends and family in the medical field and our local pediatrician, we grew relentless in our demand for some answers. Finally, a nurse was kind enough to really go on the hunt for the MRI results only to inform us that they had gotten lost, overlooked, and never interpreted. It was memorial day weekend….the doctor had left early for the day before ever coming into rounding with us, before addressing the status of our daughter who was succumbing to vicious seizures and her inability to eat. She was growing weaker and weaker with each passing hour...and the doctor had let early that day.


I requested that the neonatal hospitalist return to the hospital and explain herself. I was informed that she could not, she was getting her hair done. At that point, I asked to speak with management and we demanded an explanation and a transfer to somewhere more equipped to care for our child. Within those critical hours, soon after the nurse found that the MRI images had never been interpreted, a neurologist at the hospital in St. Louis reviewed Margot’s MRI and called to request that she be transferred immediately. At this point, the local hospitalist returned with her hair half done…


She and the care team admitted the error in their ways, they agreed that they would have advocated just as fiercely had it been their own child. They seemed understanding with our frustrations...and yet, they managed to deliver one final blow to us as they handed me paperwork they had filled out indicating that she was receiving an unnecessary medical transfer.


Yep. Can you feel my rage now?


Little did they know, I drafted paperwork like this for a living. I knew to read the fine print and I held that doctor accountable right then and there in our daughter’s hospital room. I asked her to look at our child and repeat to me what she had just said a moment earlier…”I would have done the same if this were my child.”


“Really, would you? Would you have let days go by without results from her MRI which indicated that she needed higher-level care than what you are equipped to provide? Would you have let other doctors and medical staff dismiss your concerns? And after all of that, would you have signed paperwork agreeing that this was not a medically necessary despite a pediatric neurologist at the higher level institution hospital requesting you get this patient to them immediately?” NO. No, you would not have done the same if this were your child. You would have done more. And I am certain of it.


My trust was broken. Demolished.

It would take me months before I felt that I could trust again. I think, on some level, I still struggle with trust issues when it comes to our healthcare system.


I am happy to report that Margot did get more quality care at the hospital she was transferred to. Even though I doubted every moment and recorded nearly every conversation, I was slowly learning to trust others with her care again. In many ways, I had no choice because the NICU she went to did not have private rooms for us to stay in, so we had to leave her bedside each night and trust that the nurses would take good care of her. And they really did.


We really grew to love our NICU nurses at this hospital, a few in which we feel to be like an extension of our own family these days. It was at this hospital where a very kind NICU nurse low-key suggested that I look into a neighboring children’s hospital (Cardinal Glennon) where she had just seen on the news that they were seeing success with managing drug-resistant epilepsy with the use of CBD oil.


I started making calls and establishing relationships with Glennon’s neurology team before our daughter was even discharged from the NICU. Within a few months, unbeknownst to us, we would walk through the doors of a place that would forever change our lives and heal our hearts.


From that first neurology clinic visit, through several PICU stays, and multiple long hospitalizations; I was met with compassion in nearly every interaction while at Glennon. Be it the housekeepers, hospitality workers, the lab techs, the nurses, dieticians, AND the physicians. I felt respected, I felt heard, I felt validated, I felt welcomed, and I felt supported. I began to realize that this was the kind of care I was looking for, it was the kind of care I needed as a caregiver in order to feel safe and confident in the care I am providing for my child. It was the same kind of care that I received so many years ago when I was a child frequenting Children’s Mercy Hospital in Kansas City, MO.


Through all of these interactions, I began to learn how to trust again. And if you listened to my introduction episode regarding my pregnancy and now that you know more details regarding Margot’s birth story, I am sure you can surmise on your own that my trust was not something which was easily earned.


Believe it or not, Dr. Tanios was one of the last few doctors to join our care team. She came into our lives after we had slowly started establishing with several other specialty services.

I mentioned in last week's episode that Dr. Tanios came into our lives during an extremely stressful time, so I would like to take a moment to share a little more about that time.


She was introduced to us through our clinical dietician during a time when Margot was hospitalized yet again for aspiration pneumonia. Margot was on a lot of sedating seizure meds since she was born. She never really had a strong suck or swallow, in fact, she could barely take a pacifier without assistance, she just didn’t have the strength to hold it in her mouth, but this girl LOVED to eat!


We had spent the beginning of Margot’s life in the NICU observing her have desaturations every single time she tried to take a bottle. I know what this means now, it means she did not have a safe swallow. It meant that she was choking and aspiration every time she ate. Aspirating means the food, the medicine, anything in that bottle would go into her lungs which could make her very sick. At the time it was difficult to determine exactly what the cause was of these desaturations because she was having so many seizures. Was it aspiration? Was it seizure activity? We just did not know.


It was clear that she did not have strong oral skills and that she would likely need a g-button. This was brought up, but it was done so in a way that made us fear the mean old speech therapist who would force us into a g-button. Instead, we were pressured to get her to eat by mouth in order to be discharged from the NICU and we were encouraged not to have swallow study performed in efforts to avoid the (drumroll sound effect) the placement of a g-button. In hindsight, this logic was so completely flawed and so very problematic.


I don’t remember exactly what was said to make me fear the idea of Margot getting a g-button, I mean it feels ridiculous now to say out loud that I feared my daughter needing the same thing that helped me to thrive. I think, more than anything, I was not ready to accept what felt like defeat. It felt like, as if by considering the placement of a g-button, we were accepting that she may never be able to eat by mouth again.


We were on maybe our 4th hospitalization for aspiration pneumonia at Glennon when Dr. Tanios came into our lives. Dr. Tanios took the time to calmly explain to me exactly what was happening and how it was causing Margot to become so very ill.


My immediate feelings were those of anger. I couldn’t shake the words of a previous doctor when they said “children like this are lucky if they survive their first year.” I struggled to reconcile how something like that could be said while they were also fostering within me the fears of utilizing life-sustaining interventions (like the g-button) rather than encouraging us to provide Margot every fighting chance. I will never understand why we were made to fear a g-button, it seems so trivial and minimal now. Especially when you consider that it truly saved our Margot’s life. I am certain that she would not have survived infancy had we stayed the course of avoiding the g-button.


The way Dr. Tanios delivered the information was exactly how she described it in last week’s episode. She was quick to listen, slow to speak, and supportive in every step of the way. She gave us the information, she presented all possible options and outcomes, and she did so with confidence in her conviction and compassion in her approach. She knew Margot needed a g-button and still, she did not take that choice away from us. Instead, she empowered us by educating us and then she gave us the autonomy to make the decision ourselves. This, all in our first meeting. It is no wonder how the woman had quickly earned my sincere respect and my trust.


I share all this with you because you might be finding yourself in a similar situation. You might be a mom in a NICU right now questioning what is going on, what is happening, should you advocate in a certain way….

Or maybe you are looking at a conversation that pertains to an unexpected procedure, a new device, a new machine, another new norm….


Whatever it might be, if you are feeling on the fence about it or you are unsure if you are receiving all the information, I would encourage you to advocate for more. Be it a list of options and possible outcomes, a care conference with your team, or discussions with palliative care to help educate and advocate for you. Worst-case scenario, do not be afraid to seek out a second opinion. Not only did Margot survive her first year of infancy, we did too - it was all because of a second opinion that landed us in a place which we have come to consider our home-away-from-home.


Moral of this entire saga....

Trust and communication are two necessary ingredients for a quality patient/family/doctor relationship. I can’t tell you what a difference this makes in our ability as caregivers to provide for the loved ones who depend on us. By sharing my own experiences and the perspective of Dr. Tanios, it is my hope that we have helped to provide a framework for what to look for and what to expect when evaluating the relationship you have with your own care team.


I know that I personally learned a lot from this episode regarding the day-to-day bureaucratic obstacles that healthcare workers face when trying to deliver exceptional care. I want to paraphrase something important that I think deserves repeating...Dr. Tanios said something towards the end of our conversation in regards to what can be accomplished when a healthy and trusting relationship exists between a care team and their patients and/or families...she said, “(we) try to do our best, knowing that nobody - neither you nor me - has a magic wand”. I could hear it in her voice, as I have heard it in the voice of so many other dedicated healthcare workers; they are here to help, they want to fix us all, but sometimes the impossible becomes just that, impossible. They are, after all, humans just like you and me. As hard as it is to hear that, I think it is important to remember this.


As critical as it is to advocate for our loved ones when we sense that things are not right, it could also be beneficial to show our healthcare workers some grace when they are tasked with difficult and rare cases or when it becomes clear that some things are just out of their hands. But never for a moment let yourself feel bad for asking questions, for requesting more information, for pressing for a clear explanation, and for reminding them that you are human too. A human who is simply trying to be the best advocate that you can be.


If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at www.atypicaltruth.org. You can also find Atypical Truth on Facebook and Instagram.


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The beautiful soundscape behind this podcast is titled "Rugla" it's performed by my favorite contemporary music collective from Iceland Amiina. The cover art for Atypical Truth was designed by the lovely and very talented Kendall Bell (@littlebell.co)



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