Personal Note: A Truly Amazing and Awful Week –

[11/19 Update: After nearly 9 days in the hospital, all 3 of us are home after Mrs. Barred was discharged Wednesday afternoon. She had sent me and the baby home the day before so we could all get some rest. We have close family members helping out for next few weeks. Thanks again for all your messages of outrage, sympathy, and support since last Friday.]

[Edited 11/14 to add a note at bottom]
Mrs. Barred and I welcomed this baby girl pictured above in our life on Tuesday, in what is likely quite a development to you. Lil’ Miss Barred (Iris) is awesome and beautiful and we’re so happy for her to be part of this world.  I had, of course, in my mind planned some “hilarious” and “clever” introduction to the world on Twitter, and the fact that I was honored to be featured in the City Paper the same week was a stunning coincidence that really would made this a banner week. But instead of being home as scheduled Friday or Saturday,  we are sleeping in separate rooms in the hospital from the baby and who knows when we will be there after Mrs. Barred had a second surgery on top of a painful and infuriating experience.

Mrs. Barred’s lifelong health issues (mixed connective tissue syndrome, an autoimmune disorder without a name), which has resulted in frequent (including several life threatening) hospitalizations at GW since she moved to DC back in mid 2000s-resulted in one doctor saying that she couldn’t get pregnant and others saying she shouldn’t give birth. So her doing so, and keeping our baby healthy in a global pandemic is one reason why she’s my superhero.

For all of her history at GW, she thought going here for delivery (not a common choice for most people we know in DC for births) would make any complications go more smoothly or even avoided if possible. That has not happened. After the c-section, her complaints about excruciating pain were not taken seriously by anyone, even as she repeatedly said “Help Me!” for 5 hours, as they gave her only typical pain meds but refused to call her pain management doctor or just as easily review her chart to see her history tolerating pain meds without issue. Finally when we moved into our overnight room, a special pain management team agreed and quelled her concerns, saying they’d approve specific additional relief. But 5 hours later nothing had happened until we finally asked the nurse and attending docs about it. There was an outright refusal to implement it at first and reluctance turned into incompetence to put in the relief. At least a few of the medical professionals were openly skeptical in front of her that she could be in that amount of pain. In the end it took about 11 hours for her to get any relief to even be able to touch her baby after she gave birth.

Finally on Wednesday, her pain was closer to what would be expected the day after a c section and we spent a lovely day with the baby, seemingly back on track. But she noted to a nurse that her stomach was distended more than it was the day before. The nurse flippantly responded “I didn’t see you yesterday, so I wouldn’t know.” Later that night she started feeling some shoulder pain but chalked it up to how she was sleeping. But at 4a Wednesday morning, she woke up feeling it more acutely as well as some chest pain. Because of her pulmonary embolism history (which they did pay attention to because of relevance to surgery), within 15 minutes maybe 10 nurses and doctors were in the room to assess what was going on. I was ushered out to the hallway with Lil’ Miss Barred. Soon they noticed the distended belly and used ultrasound on her torso to discover there was internal bleeding and the decision was made to operate. But even in that discussion the resident misstated her medical history and missed other details clearly on her chart. Mrs. Barred stopped them and had to present her medical self and history to the team in a dire situation because this was life and death. She then told a room of White doctors and nurses “I know It’s not an exaggeration – the statistics are clear about Black mothers. I don’t want to be in the news about another Black mother in DC who never came home with their child. Please don’t let me die.” They assured her that it wouldn’t happen. As she was rolled out of the room and past me and Iris in the hall, we both told each other she loved me and she told me “to take care of my baby.” The whole situation was shattering (I can’t but weep each time I think about it) as we truly didn’t know whether we’d see each other again.

Thankfully she returned a couple hours later (in the meantime while I waiting I saw my profile in the City Paper People Issue, which couldn’t be the biggest dichotomy ever-a massive high and a massive low-that’s what I used as a Twitter distraction for the day.)  They sent Lil’ Miss Barred to the nursery since I had a tough time emotionally then and it was necessary to keep Jo and her rested while the medical team took more look at her. Once again the pain management orders were unnecessarily delayed and she suffered in more pain.

There was discussion of moving her to the ICU since post partum medical team weren’t really suited for task but they figured out it was better to put her in the larger labor and delivery rooms (where mothers usually give birth naturally) which  have a better nurse coverage. At this point her pain has improved somewhat but she also has breathing issues (possible pneumonia from surgery/anesthesia), possible blood clots, and her blood measurements are still not out of the woods. She has continued to advocate for herself forcefully-she repeatedly is told here thats she’s such a strong woman, but she doesn’t want to have to be a strong woman, she wants medical science to do that job. Instead of a loving few days in the hospital, it’s been pretty traumatic.

The seeming inability for nurses and medical staff to initially believe her has been such a disappointment to say the least. It’s hard to believe there isn’t unconscious/implicit bias at work here against Black and/or younger looking patients like her – https://www.aamc.org/news-insights/how-we-fail-black-patients-pain. Magically when she was able to speak and use medical terminology, or mention her academic or work background, everyone then actually seems to believe her. This isn’t new-this has happened to her for her life, but it’s been especially tragic here.

But I end we are all hopeful that things will be cleared up in due time and we will all get to go home together as a family soon. We were able to spend 4 hours with us today in the suite which helped our mood though is still mostly in nursery. Please keep us (particularly Mrs. Barred, Jo) in your thoughts/prayers/good vibes.

[edited to add 11/14: We’re grateful for the heartening response we’ve received from real life and Internet friends and family,  as well as stories I’ve gotten from other women (not just people of color) who’ve had similar harrowing stories of pain relief neglect or childbirth. Just a few things to add: this post was really based on what Mrs. Barred said to 5 or 6 doctors, nurses and a social worker Thursday and Friday. I had planned to post something when we were discharged but she told me that it made most sense to post now. Because of those conversations she had, (and my backup as needed) her standard of care currently appears (fingers crossed) to be closer to what he had wished and expected-her needs are being seemingly addressed and there is a clear shared desire to get her out of here healthy and discharged with the baby and me. There still were a couple doctors yesterday who didn’t get that pain is manifested quite differently by people who suffer chronic pain than others, but they were schooled quickly by us. She still is on some oxygen and has an upsetting number of tubes sticking out of her (a IV tower alongside each side of bed), but again in stable, slowly improving condition. She’s aware of the patient advocate (she asked for her at one point; she’s used it many times before when needed) and the GW patient bill of rights (Mrs Barred actually helped write them a decade or so ago and had to say “this is my right” multiple times this week to get them to do something they should have done anyway ).

This account is our perspective and perception of what has occurred. The medical staff, sometimes in the moment, but usually after the fact, have provided mostly unsatisfactory-in-the-end rationales and explanations about why they did what they did (often pointing to concerns about respiration). But this does not change the fact that there was seemingly little to address her concerns at the time and significantly, little to acknowledge/use her extensive pain management and medical history at GW to address these issues. Coordination of care was seemingly lackluster in execution, which resulted in miscommunication to both us and other members of the team and unnecessary delays. We’re both hoping the team here takes long term lessons that can make sure this doesn’t happen again. And to be clear there have been a few docs and nurses who have been incredible and we will never forget their kindness in their actions and words.]

 

[11/15 Update: Yesterday an anesthesiologist came by our room and said to her “You probably don’t remember me, but I was the anesthesiologist down in the operating room at 5:25a on Thursday. And I just wanted to say how impressed how calm you were in what must have been a scary situation. You’ll be such a great mother how you advocated for yourself.” My wife told me that she had looked around at every person in the operating room and said calmly “Please don’t kill another Black mother. I want to go home with my baby.”]

5 thoughts on “Personal Note: A Truly Amazing and Awful Week –

  1. LB

    Sending you both light and love, and I am furious at your wife’s experience and that she even has to advocate for herself like that. Kudos to her for being the badass that articulates the problem and then goes after it even post partum when everyone feels fucking terrible. What a boss.

    Reply
  2. Trying2BePositive (@hrabk)

    Wow, I’m so sad to hear that such a joyous occasion was marred by the pain and dismissive response to requests for help. I’m so glad you are so strong and now safe. This sure seems as if it’s worth a follow up with hospital leaders, I suspect they imagine that this wouldn’t happen in their hospital. Sending you all love and peace and congratulations, thank you for sharing your story of courage!

    Reply
  3. Alex

    I hope you’ll make time, even if it isn’t for a few months, to voice your experience/concerns with hospital administration, even if only through a letter. Best wishes for continued health and healing!

    Reply
  4. Jacqueline Horton-Bowser

    WOW sad to hear Jo and you went through such a bad experience.I’am glad to hear the road to recovery . Congratulations and will continue praying Much Love to you and my beautiful Cousin. Take care of baby Iris, she is a Cutie Pie🙏🏾

    Reply

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