Patient Advocacy During Conception, Birth, and the Postpartum Period: A Guest Blog by Bethany Witte

I am so excited for the first Motherhood Strong Blog Guest! Let me introduce you to my sister, Bethany Witte. We shared a bedroom for the better part of two decades, have definitely fought over clothing, and I could only attempt to be as cool as her circa 2004 with her stylish flippy hair and dance moves. Her eldest son and my eldest daughter are about a month a part in age, so while we didn’t share our clothes so graciously while growing up we have shared motherhood a bit better. I love watching our kids grow up loving each other, and I love even more learning how to be the best mama alongside my sister.

Bethany’s journey to motherhood has been vastly different than mine. While on paper we should have some of the same fertility struggles, we don’t. You’ll read below how Bethany struggled with miscarriage and IVF, where I have gotten pregnant easily twice. She has had two c sections, I have had two vaginal births. I can’t explain why, but her experiences have helped to shape my empathy and compassion for mamas in similar situations.

I hope you enjoy her story, and learn from her experiences advocating for herself as a patient, a mother, and a woman.

“In a perfect world there would be no need for a patient to advocate for herself; healthcare providers and patients would discuss options, benefits and risks to each option, and together would make the decision that is best for the patient. Unfortunately our healthcare system, to some extent, is broken. Providers may have the desire to do more but don’t always have the ability. There are limited resources, including time, and many decisions are dictated by what insurance will pay for. However; that doesn’t mean we are helpless about our care. We still have the right to question things that are done to us and for us and we have the right to protest these decisions as necessary. 

When my partner and I began trying to build our family we assumed it would be easy. After all, we spend years trying to prevent pregnancy, it must be easy to do...right? Turns out it wasn’t, but that was just the beginning. We had just moved to the area and I hadn’t yet found a healthcare provider. When I got pregnant I searched my insurance website, found one with good reviews, and made my first appointment. Unfortunately I began to miscarry before that first appointment, and went to the office where it was confirmed. It was at this appointment, my first to this office, that I had my first experience with poor care. The doctor’s line of questioning insinuated that the miscarriage was my fault (or at least that’s how I interpreted it as I sat on the examining table alone, sobbing)- Did I smoke? Drink? Use recreational drugs? Was I on birth control? Oh, so I wanted this baby? I must have miscarried because I didn’t let my husband continue to penetrate me for 20 minutes after ejaculation and then lie there with my hips propped up for another 30 minutes (I wish I was joking when I said he gave me this extremely outdated advice). Meanwhile, I had just told the nurse what I did for a living (working with children with delays and disabilities) and she had the audacity to tell me that “This was all God’s plan” and “This was better than a child with disabilities.” While some people might believe those statements to be true, it was not the time nor the place to say them and I was not in the right frame of mind to hear them. Needless to say, I walked out of that office and never went back, not even for my follow up. Lesson number one: when healthcare providers make you feel like crap before they even get to know you it won’t get better as they get to know you.

I found another healthcare provider and after another few months without getting pregnant I made another appointment. Here I was told that I hadn’t been trying long enough to warrant additional testing. Everytime I had a miscarriage I “restarted the timeline of trying”, so I had to wait for one year after my first miscarriage before she would even bother writing the referral to the specialist. Keep in mind that by this point we were 7 months into our journey, with only one short pregnancy during that time to show for it. I wasn’t happy with that answer either, as my gut told me that something was just not right. Lesson number two: don’t settle. You know your body better than anyone else. Fast forward another few months and I was on my third provider and second miscarriage. It was finally at this appointment that I had someone look me in the eye and say “I’m so sorry this happened to you; if you’re ready to see a specialist I am willing to write that referral.” She laughed when I told her I had already called an IVF clinic then gave me a hug on the way out. It felt SO GOOD to finally be heard and her empathy has kept me at her office for the last 5 years, even though her front office staff kind of sucks. Lesson number three: sometimes a good doctor is worth a shitty front office.

Finally, in September 2017, our first rainbow baby arrived. He was beautiful, perfect, and did not arrive at all how I planned. I had been induced at 37 weeks gestation due to pre-eclampsia and toxemia. After 3 days of a failed induction, and many discussions with my primary care provider and her colleagues, my partner and I decided a c-section was the safest, and fastest, way to get baby out and keep both of us safe. And it was that moment that I decided my next birth would not be a c-section. Not that I wasn’t thrilled my sweet boy was Earthside safely, but that’s just not how I saw it going down.

Post birth with my son, note the puke bucket

So I began to read, listen, and seek out as much information on VBACs (vaginal births after Cesarean sections) as I could. Over the next three years I spent hours and hours on this topic...I learned the risks and benefits, I did exercises and stretches to help prepare my body, I took hypnobirthing classes to prepare my mind, I researched potential paths and outcomes and how I could prepare for any of them. I. Was. Ready. I got pregnant in January 2020 after a long journey including a failed embryo transfer, egg retrieval, and a chemical pregnancy.

And everything went as planned...at first. Except that’s not how labor and delivery really goes. Although I wasn’t at all dilated or effaced at my 40 week appointment I went into labor the following evening, with inconsistent contractions and a leaking bag of waters (BOW). By 5 am the next morning I had called the midwife and gotten instructions to head to the hospital to check things out. I felt so empowered as I walked in (by myself, in a pandemic, as my husband was still at home with our three year old) and I truly felt like I could calmly and confidently handle anything that came up until my partner arrived at the hospital to help support me. I had already declined several cervical checks in office (much to the nurse’s disbelief), had agreed to a repeat section at 40+6 (later than what my doctor usually did but she was willing to push it back to give me a chance to VBAC, as I was otherwise low risk), had discussed what induction methods we were comfortable with, had made my birth preferences known to anyone who would listen, and had worked out a VBAC plan with all 3 OBGYNs and the one midwife at the office. Lesson number 4: don’t just discuss your plan with one provider if there are multiple at your office. Make sure everyone and his dog knows what you want and aren’t comfortable with! I felt as if all of these discussions had helped me feel strong and confident in my self advocacy. 

I was admitted at about 7:30 am and my partner arrived around 9 am. My midwife and I had decided that I didn’t need to be checked again until around noon, so I spent the morning managing the pain with breathing techniques, movement, and various changes in position. I was still feeling great. But at noon when I got checked she discovered that I was only a centimeter or two dilated, and my BOW was still intact. Since I had had a slow leak for over 18 hours by this point we decided that she would manually break the BOW...and out came the meconium. Contractions intensified significantly and I was no longer able to manage without assistance. I did not labor at all with my first and really had no idea what to expect in terms of pain- I now know that there is literally nothing you can do in advance to help with this. Some people are able to handle it without medication, some aren’t, and there is nothing shameful about either path! I wanted to try IV pain medication first but for me personally this was a terrible choice. I alternated between falling asleep between contractions with crazy hallucinogenic dreams to writhing in pain, creating a rat’s nest of hair on the back of my head and causing my husband to tear up. I felt out of control, which is not a feeling I’m fond of. At 3 pm my partner convinced me (I was open to this, it did not take much convincing) that it was time for the epidural and there were no awards given out for length of time labored without an epidural. Let’s do it. 

Having it placed allowed me to relax and enjoy the rest of my labor, while also letting my body do its job and continue dilating. I started dilating about 1 cm/hour and things were going well. Night fell, the lights were dimmed, the diffuser was going...I had regained my confidence and was ready for the next stage. But unfortunately things continued to go downhill. My temperature spiked to over 100. Baby was no longer tolerating contractions and her heart rate was dipping after the peak of the contraction (a bad sign, I later learned). My midwife came to hang out in my room...I thought it was just because we are super cool and she really enjoyed our company but it turns out she wanted to be close to keep an eye on things. We tried different positions...oxygen...turned off the pitocin...and honestly, despite these somewhat scary things, I still truly felt comfortable and safe still, as I had discussed all of these things with the midwife before making decisions. But at 7 pm and 7 cm I was losing too much blood, baby still wasn’t doing well, my fever continued to climb, and here came the call I had hoped I’d never hear again- it was time for another c section. I broke down in tears, devastated that I wasn’t “woman enough” to deliver a baby vaginally. And yet I also knew that we had to do what was best for both myself and the baby, and I trusted that my midwife had truly done everything she could to get me the VBAC I wanted...and if she made the call to have a c-section then it must have been the right call. 

But unfortunately things continued to get worse. I was rushed to the OR, where we learned that anesthesia wouldn’t be able to arrive for about 20 minutes. If you’ve ever researched VBAC attempts you know that time is of the essence if an emergency c section is needed. I only decided to do a TOLAC (trial of labor after Cesarean) because the hospital had multiple anesthesiologists on site at all times (or so I was told), multiple ORs, and a certain level of NICU (all recommended by ACOG as well). And yet..here I was, being told that my emergency section would have to wait?? Some of the symptoms I was experiencing are also symptoms of a uterine rupture, which can be fatal to Mom or baby if action isn’t taken immediately...if baby isn’t born within minutes of a rupture being detected. Thankfully I was not experiencing a rupture, but we did not know that at the time. So I continued to lie there on the operating room table- naked and exposed, feeling crucified with my arms tied down, shaking uncontrollably as my body was still going through labor, and now transition, and alone, as they wouldn’t allow my partner into the OR until after anesthesia arrived. We waited almost an hour before the anesthesiologist finally got there, and I still to this day cannot even begin to describe how awful this was- physically and emotionally. Our sweet girl was born at 8:54 pm, almost 2 hours after the midwife made the call for the section. When she was brought to me I had to decline to hold her, as I was still shaking so badly that I was afraid I would drop her. I was retching and gagging from the anesthesia, which I expected because of my previous c-section reaction, but I had been promised that it wouldn’t happen again. My fever was over 101 at this point and I just felt completely out of it. It took longer than normal to close, as I continued to bleed excessively and the midwife and OB had to stop frequently while I gagged and shook. 

Immediately after my daughter was born.

I put on a smile for the camera when I was actually miserable and asked her to be taken away moments later.

When I finally got to the recovery room I was told that I couldn’t hold my baby. My precious, resilient, screaming baby was a mere 5 ft away from me but I wasn’t allowed to hold or feed her “because of my fever.” The nurse tried to contact our regular pediatrician “to get permission,” but of course no one was at the office at 10 pm on a Saturday night. The CNA asked if I wanted to hold her and I said “of course, but I’m not sure I’m allowed to,” which she somehow interpreted as I didn’t want to?! My husband was bouncing back and forth between his sobbing child and his feverish, dazed wife, unsure of how to help either one of us. I’m not even sure how long we continued like this, but eventually I finally got to hold and breastfeed my girl, doing the skin to skin that should have been done minutes (or hours) ago. It was after midnight before we got back to our room- remember how the midwife called for the section at 7 pm?- and another hour or two before we were finally able to rest. 

The next few days we ran on adrenaline. I knew how to recover from a c-section and I am a good healer. I asked my OB to add a few extra stitches to one area of the incision that had had trouble closing with my first section. He had no problem doing this and was later grateful that I had pushed for it, as it healed really nicely. We had an incredible postpartum stay and the nurses were wonderful. It wasn’t until about a week or two later when the reality of what had happened began to sink in. I know that a hormonal crash is normal after birth but I had never experienced the things I was experiencing. Thankfully I had established a relationship with a licensed therapist during my pregnancy and I was able to call her for an emergency session. I cried the entire hour. Not only did I have to have another c-section, but it was so far from the section I had wanted if I’d had to have one. I grieved the birth experience that I never got, and will never get. I thought about what could have been if my midwife hadn’t been watching my baby’s vitals so closely, and how we could have lost our rainbow baby or she could have experienced a significant developmental delay due to lack of oxygen. I had what my therapist referred to as “PTSD-like flashbacks” for months after delivery. All I wanted to do was talk through what had happened but I was told I wasn’t allowed to make my postpartum follow up appointments with the midwife as she wasn’t the one who “officially” delivered the baby (since it has to be an OB for c-sections), even though she was the one who had been present throughout all of labor. And while I adore my OB, he didn’t know anything that had happened leading up to the c-section. I finally sent the midwife a message in the portal and her nurse called me back and switched my appointment, allowing me the opportunity I needed. The midwife spent an hour with me, printed out an article from ACOG, and showed me the fetal monitoring strip, going minute by minute and explaining what happened and why she made each decision. She handed me tissue after tissue and reassured me that I had done nothing wrong, and nothing could have been handled differently. A c-section would have been the outcome even if I hadn’t been a VBAC candidate. 

She also encouraged me to write a letter to the hospital explaining my frustration and anger about the situation. I was hesitant...wasn’t this my issue to deal with? But when I met with the OB a few weeks later he expressed the same sentiment as the midwife, and let me know that my case was being discussed on a department level. What happened to me WAS traumatic. It WAS NOT okay. My feelings were absolutely valid and what happened with the anesthesia delay and being unable to hold the baby was unacceptable. Their encouragement, along with the encouragement of my therapist, finally persuaded me to sit down and put pen to paper (or rather, fingers to keyboard). It took awhile, but I did eventually hear back from the patient advocate. The anesthesiology department was being investigated. The nurse who refused to let me hold my baby, as well as the entire L&D staff, was being provided some education on how fever is not a contraindication of skin to skin. Changes were being made. And while I think they were ultimately worried that I was planning to take legal action (that was never my intent), I felt better knowing that my terrible experience might help someone else some day. 

Four and a half months later there are still days when I struggle to process what happened. There are days I cry because I will never get that picture perfect, beautiful moment where I pull my babe from my body and immediately place him or her on my chest while my husband looks on with proud tears in his eyes. There are days I’m angry that I missed out on so much of the “golden hour” after birth and I can never get that back. And there are days I look at my amazing, science made and science born, rainbow miracles and don’t care how they got Earthside, because they are here and they are perfect and they are mine (and I guess I’ll let my husband have some credit too). 

Through it all, I’ve learned some important lessons in advocacy, but also in letting go. It’s important to feel heard. It’s important to feel like your opinion is valued and your provider cares about you as more than a number. It is important to be taken seriously and to have an open, honest, and trusting relationship with your care providers. But then it is also important to recognize that I am still the patient, the doctor or midwife is still the professional, and so many things are outside of everyone’s control. It is impossible to predict and prepare for everything and you just have to trust that your provider is going to do what’s best for you and your baby, even if it’s not something you necessarily want. I didn’t WANT another c-section, especially one like I had. But I’m glad I got one. And I’m glad that all of my providers- midwife, OB, and therapist- validated me and pushed me to voice my concerns. I would encourage everyone to do some research on any situation that might come up- but recognize that your google search is not the same as a medical degree. Listen to your gut, push for additional testing if needed, and don’t take “no” for an answer. Know that you can refuse anything, but also know that that refusal may come with unintended consequences that you may not be able to predict because you are not a medical professional. Ask about your options, and the pros and cons of each. You and your provider should be a team and if you don’t feel like that, find a new one. You are working towards a common goal, act like it! And my final piece of advice...if you have experienced something that you feel was traumatic (and it doesn't matter if no one else agrees with you) please seek out additional resources. Many mental health services are available online right now, making them easier to access. There is no shame in admitting that you are struggling and need some assistance- we are not expected to go through this life alone!”