Medical (Mis)trust

My mother turned 22 on August 2, 1986 and exactly one month later, she gave birth to me. Fast forward to 2 months after my 22nd birthday on September 2, 2008 and I gave birth to my firstborn daughter. I did not plan this to happen this way, but life sometimes has a funny way of repeating itself. It was a welcome deja vu. I always knew I wanted to be a mother.

Born at home (in an apartment in a high school dormitory because my partner and I were live-in dorm parents!) she was a wonder. We had not opted for any of the prenatal testing and even chose to forgo routine testing such as ultrasound. We knew we would keep this child no matter what ultrasound showed and we were concerned about unnecessary exposure to radiation. It almost seems ridiculous now because she has ultrasounds and x-rays constantly to monitor her health of her kidney transplant. I went into labor on Halloween night and continued to labor until her birth in the afternoon on November 2. Her birth is one of my favorite stories to tell, but it is not the one pressing me out of my bed in the middle of the night.

We almost went to the hospital in those first moments. She was having a hard time breathing and required oxygen and suctioning from our skilled and competent midwives. Ultimately, a trip to the steamy shower with her dad and some back-rubs got out all of the extra birth gunk in her lungs and she was breathing beautifully. The midwives said it was a close call though. They almost sent us. As previously arranged with the pediatrician, we phoned to let them know that she had been born and scheduled her first appointment for 24 hours after her birth. The midwives spent a lot of time measuring her, weighing her, and completing the newborn check-up.

We wrapped her up in a swaddle and walked her to the pediatric appointment just a few blocks away from our apartment. Our walk across the high school campus was more eventful than the appointment itself with word spreading quickly and teenagers rushing out to be the first to see our new resident. The pediatrician seemed like she was trying too hard to make us feel like she was cool and hip with our homebirth. She did not feel like she was paying attention to our baby or our questions and rather spent much of the time lecturing us on maintaining romance in our relationship now that we had a child. She told us of her own divorce and warned us of a similar fate if we did not care for each other through this new transition. All of that advice felt weird and out of place and frankly not what we were there for.

We left the appointment feeling reassured that our baby was healthy and safe and walked home discussing what seemed to be the most important thing at the time. What were we going to name her? We still had a long list and no clear favorites. Jamie did not have to return to work outside of caring for the teenagers in our dorm for another week so that was our goal. To pick out a name before he went to work. On the night before he was set to leave us for the first time, I asked him, “What is your favorite if you had to choose right now. Just tell me.”

“Corah Brigit.”

I was shocked because that first name came from my side and I loved it. I had no idea he was even really considering that one. My heart felt so full in that moment and my eyes were brimming. “That is my favorite too.” Corah Brigit. Corah Brigit. Corah Brigit. Our child had a name.

With Jamie returning back to work, I had a lot of time to sit and stare at my new soulmate. She was almost constantly attached to my breast. She loved to nurse and took to it immediately. She wanted to be no where else. We co-slept and so even in the night she had on demand access to my breast and my body. As I wanted it to be and as she wanted it to be.

The midwives had been back a couple of times over that first week to check in and do weights. She lost her initial weight that is normal after birth but for some reason she was struggling to start to gain. They were concerned but not overly so at this point. At their recommendation, we made another appointment at the pediatrician’s office. This time she seemed annoyed with us. She already told us our baby was perfect and we were supposed to be these chill homebirth parents so why were we acting so anxious about our baby? Why weren’t we just trusting the process? She told us that Corah was slow to gain but she was fine! “Look at your baby! She is not a failure to thrive baby.” She squeezed Corah’s fat little roly poly legs. I smiled, “ok.” That is what we wanted to hear so we heard it and went home to call the midwives to update them on Corah’s appointment. They were no longer her caregivers at this point but they were emotionally invested in the outcome.

The pediatrician had scheduled us for another weight check at one week past the last weight. Looking back I get sick to think of this. A lot can happen in a week. A baby that is not proving to be able to gain weight after birth should never ever go that long without a weight check. Once we admitted her in the hospital weights became an on the hour routine. and the pediatrician wanted us to come back in a week! In this time, I started getting more and more anxious. Everytime she would spit up, I would feel the panic rise in me. I would cling to her and search her face for reassurance that she could not give. She was not overly irritable and she was going through wet diapers constantly so everyone was reassured. Except for me. I could not shake this sinking feeling that she was in trouble. I did not know exactly what was wrong, but I could sense that my baby was struggling.

I could not wait the week out as directed by the doctor. Everyone was getting worried about me. “Crystal….you might be having symptoms of postpartum depression…the doctor said, she’s fine. You need to calm down and just enjoy her!” and “You need to take a break and relax. Let someone else take care of her and take care of yourself.” All of this advice and feedback made me feel wild and crazy. At this point, I knew something was wrong and I knew it wasn’t in my head. I knew postpartum depression was real, but I also knew that it wasn’t the reason that I was so worried about my baby.

I called my midwives again for guidance. They told me to just go in and get another weight even though it wasn’t time for her appointment yet. Corah was almost 3 weeks at this point. I walked down to the Hospital and asked them to weigh her. It is a simple and quick nurse visit. No doctor necessary, I just needed to see the number and get some reassurance. They put her on the scale which sent her into a screaming fit. She hated that cold hard scale and she still does. My heart fell through my body and onto the floor. The room got blurry. I could see people moving around me but nothing was clear. I scooped her up and steadied my voice. This was no time to panic. My child was in danger and now I could not be swayed from the truth that she needed help and fast. “Oh my god!” oops my voice was rising, but I did not care. I needed my baby to be safe. “Her weight is down again! Oh my god, what do we do?” I begged the nurse for answers but she was already pushing us to the door. Jamie was at work and I was a young mother who was overreacting and didn’t know anything about anything.

“Your baby is fine. The doctor will see you again tomorrow. This is a normal weight for a 2.5 week old baby.”

“But she was 9 lbs at birth! So this is NOT a normal weight for HER! She should be gaining, NOT losing!” She was down to 7.5 lbs. I was getting no where with this nurse and everyone else was ignoring me.

I wrapped Corah’s tiny body up to go back into the now chilly late fall air and ran out of there without even seeing where I was walking. I could not breathe. I knew we were in for it and I was realizing quickly that no one else knew that yet. I called Jamie first. He was concerned about the weight but also reassured that the medical advice was to wait for our appointment tomorrow to talk it over with the pediatrician. I could not wait that long. I called my very close friend who is a medical provider with a background as a nurse midwife. I knew that she would be able to hold all of the truths… Postpartum Depression… Newborn Weight loss… Advice from the Pediatrician…and give me advice that considered it all. Plus, I trust her. “Beth,” now I was crying. “What should I do?”

She did not give me the answer that I still was hoping for. She did not tell me that everything was ok. Our conversation was short and grim. She was worried and she needed to make some calls and would call me back. Within an hour, my cell phone was ringing. I was sitting on my couch and doing all that I could to hold it together. Corah was nursing and dozing on my lap with her fingers on one hand wrapped around my pinky and her fingers on the other hand tickling my belly. I tried to stay in the moment and just focus on her and love her, but the phone call made that all crash down around me. Beth had secured us an appointment for the same day to meet with a different pediatrician at another small town hospital near us. I called Jamie and he left work to take us.

The first pediatrician came in and checked Corah out from head to toe. No bloodwork. No thermometer even. He looked me dead in the eye and said, “I see what is going on here. She is having a hard time nursing because of her chin. Do you see how it is kind of set back a little too much?” I looked down at my child’s face and felt the heat flood mine.

“Excuse me? What are you saying?”

The doctor continued. “Let’s schedule her for some physical therapy for that chin and get her nursing better. When babies aren’t able to nurse well, they can not stimulate enough production so that might be an issue here too.” My baby was a power nurser. I was producing a ton of milk as evidenced by my massive rock hard painful breasts that had seemed to grow three sizes overnight. (That part did not last!) I had to change my shirt every hour and didn’t even bother wearing one in the house at all because it wasn’t even worth it. Nursing was not the problem. My milk was not the problem.

I wanted to scream at this man. “LOOK AT MY SHIRT SOAKED IN MILK!” but instead I said, “No. Please, listen to me. She is a great nurser. She breastfeeds all the time. I have had the midwives watch her nurse and she latched immediately like a pro. I have enough milk. She is peeing constantly. We use cloth diapers and we have to change them every hour! She pees all the time. Please. Please.”

He stood up to leave the room. “I have set an appointment with the physical therapist. You can go see them and then we can go from there.”

This marks the first appearance of what my family has now dubbed “Mama Bear.”

I stood up to meet him. Jamie had Corah in his arms. “No. We will not leave here until somebody figures out what is going on with our baby. We need another doctor’s opinion. Please.”

So they sent in another doctor. And another. And another. Each one did what doctors working in the same practice could be expected to do. they re-affirmed the initial diagnosis and prescription for chin therapy and told us to let it go.

At this point, Jamie was trying to reason with me. I looked completely out of my mind. How many doctors had told me our baby was fine? Why was I not able to accept that? but I knew that it wasn’t healthy for a baby to go from 9 lbs at birth to 7.5 lbs three weeks later. I was a young new mom BUT I had studied to be a midwife and doula. I had watched clients bring in their chubby new babies time after time at my apprenticeship at the hospital. I knew there was a wide range of normal for weights but growing was key. She was not even slow to grow. She was shrinking.

The hospital to their credit did not boot us. Finally we got the top doc. The almost retired pediatrician who had been doctoring longer than either Jamie or I had been alive. He took one look at her and ordered some bloodwork. “What is her temperature?”

I interrupted before the nurse could even answer, “They never even took it!!” I knew that he was here to save her. I could feel Jamie’s energy beside me shift too. We looked at each other while the nurse stuck a thermometer in Corah’s armpit. and that is when the panic in me, burst into the room and everyone and everything sped up. Everyone was taking this seriously now. She was hypothermic. Her little body did not even have the strength to mount a fever and her temperature was plummeting. The instructions from hero Doc. (He deserves a name! Dr. Beekman! Dr. Beekman! Thank you forever!) came quick and direct. “She needs to be in an incubator. We need to get her temperature up fast.” He was already moving. We were already moving. To another part of the hospital. We needed to be in the PICU. “Her bloodwork came back and she is in end stage renal failure. Her creatinine and her white count are through the roof. She has a raging infection. She is acidotic.” He rattled off a list of numbers that made no sense to us then. Now I wait for the labs to come back on a weekly/monthly basis and know what those dips and spikes mean without a doctor to decode.

I had found it painful to have Corah out of my arms for any length of time as a newborn. Maybe because I Was a new mom, maybe because I was a young orphan, or maybe because I already knew she was sick. I hated giving her up for family to hold and could only physically tolerate it for an hour here or there and I had to be close. I found it physically painful for her to be out of contact with me. She had been in my body for 9 months and this shock of our disconnect was a lot.

Now she was in a hard plastic box with tubes and wires coming out from every direction. I could only reach my hands in and feel her. Dr. Beekman was not a warm and fuzzy doctor but in that moment, that is what we needed. We needed the truth. We needed answers. “I have to tell you the position we are in is serious. She needs to be life-flighted to Portland where they are more equipped to deal with her needs. Right now, she is too sick. We need to stabilize her before we can transport. There is a chance she will not survive the night. It could go either way.”

I can still see that room almost 13 years later. It was all brown and beige. I was used to hospitals being white but this room was tan. Or maybe just her incubator was that khaki color and that was the only room that mattered so that is all that I saw. Jamie and I both spent the night holding vigil, neither of us slept even though there was a cot in the room for us to try. We just stood by her side looking in and saying all of the prayers that we knew how to pray. When the Dr. agreed to let me hold her to nurse, I soaked in every second of having her in my arms again.

Jamie stepped into the hall to make a phone call. Even in this moment of trauma, the American Healthcare System demanded that he make phone calls and sit on hold rather than spend those intimate moments with our child. I am so grateful for this labor from him. He has repeated it often over these years. Corah was so new in the world that she had not officially been signed up to our MaineCare yet! So while I enjoyed skin-to-skin time with Corah, Jamie made those critical phone calls to get her enrolled. If you have never had to call to sign-up for Medi-Care just imagine the most excrutiating wait time you’ve ever had on the phone and then triple it. Follow that up with an intensely frustrating conversation where you have to beg for your child’s right to life saving healthcare.

Corah made it through the night. It was one of the worst nights of either of our lives, but she made it through. The next morning, Corah was strong enough for the transport to Portland’s Children’s Hospital, but there was a big storm and we were unable to board the helicopter. Jamie’s parent’s came all the way from Boston and his dad drove with him behind the ambulance. I had to sit in the front seat away from the incubator and my baby in the back, but at least they let me ride in the ambulance. At one point I had to call Jamie and tell him we were pulling over because the Incubator wasn’t working properly. There we were on the side of the highway, waiting for another ambulance to deliver a new incubator to switch out. Still we weren’t allowed to see her. Jamie and his dad had to stay in their vehicle and I had to sit with the driver and make small talk. I remember that driver vividly too. She was friendly and kind and I liked her energy a lot. I do not remember her name, but I will always remember her face.

A team of PICU nurses and Pediatric Specialty doctors met us at the entrance to the hospital. They were there when Corah was being wheeled in on her incubator stretcher. The first face to come into focus was a pretty young female doctor. She identified herself as a pediatric Nephrologist or for those who don’t know, a “kidney doctor.” “We will need to start logging her INS and OUTS. You will need to stop nursing her and feed her bottles. We need to keep track of exactly how much fluid goes in and how much comes out.” We learned that babies in end stage renal failure, do not stop peeing, they pee too much. Part of what had made it tricky to get a diagnosis earlier on from the other doctors.

“Wait. There has to be a way to measure INS and OUTS even if I am breastfeeding her. I AM NOT going to stop breastfeeding her.” Mama Bear again. I am MUCH BETTER now at knowing when to let her out and when to find a different way to get what I want from the medical world but back then I was quick to morph.

There was some back and forth and I was mad. I did not like this doctor at all. (Now she is one of my favorites even though she has moved into a new chapter in her career and is no longer our doc. I love her dearly and we always stop and catch up when our paths cross.) She finally agreed that I could nurse under one condition. We needed to weigh Corah before and after every single time she nursed. Even in the middle of the night. We had to weigh every single diaper too. Sometimes in the middle of the night so as not to wake her up, I would weigh myself with her in my arms, then lay her down in the hospital bed and then weigh myself again to subtract her weights. The nurses brought in an adult scale for this purpose.

Here we are in that first hospitalization. Corah looking as gorgeous as always despite being very ill and me looking as exhausted and yet madly in love as I had ever been.

This story continues. On and on years of advocacy with Jamie and I constantly up to bat to make sure that our child get’s what she needs. We often go against medical advice as we did many times in this story. We expect our child’s doctors to see us as members of the decision making process and we remind them of this when they come to us with decisions and plans looking for consent without having involved us in the process of how they got there. This just happened this summer in a major way that led to Jamie having to lay it out all over again with our new Nephrologists. They have many patients but we only have one. We also know her whole self in a way that they can not and so we need to be part of the plan.

Happy and Home together. Corah spent much of her early years in the hospital, so we made sure to never take a moment of being home for granted. Here she is with Jamie.

The reason this story pulled me from my bed to write on this night is that someone told me today that I am just “one of those people following the herd.” They said that I am a sheep blindly following the medical establishment and the media. They said that to me because I have been advocating for people to get vaccinated and wear masks. I advocate for those things because I know that informed consent is critical. I know that we should not follow doctor’s advice without robust conversation and debate about it. I believe in science. I believe in medicine. It has saved my child countless times. It has also failed us many times. In the end, I am overflowing with gratitude. Medicine is not a perfect science. It is always changing and medical professionals are humans who make mistakes. I want people to get informed. I want people to know that the people who are the most vulnerable are asking for vaccines and wearing masks. Not because we are sheep, we understand intimately the systemic flaws of medicine, but because we also know that it saves lives. It saves our lives and the lives of those we love.

We just sent Corah into 7th grade after a long 18 months at home. She is fully vaxxed and in a district with a strong mask policy. She remains vulnerable as an immunocompromised person as well as her siblings who are too young to be vaccinated. I am grateful to those who get their vaccine and wear their masks to protect others and make our community safer. I do not feel angry at the people who do not make this choice. I feel grief and fear.

3 thoughts on “Medical (Mis)trust

  1. Your stories are always so sharply drawn, so deeply expressed that they take me through the emotional wringer. It’s impossible not to read your stories, and impossible not to feel overwhelmed by them, too. Thank you for writing, for being compelled to do this.

    Liked by 2 people

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