Voices Across America

My Patient Story

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Amanda

State: Virginia
Congressional District: VA04

Diseases

Chronic Pain, Mental Health, Migraine, Rare Disease

Issues and Challenges

Amanda has encountered: Gaslighting

My Story

(TW: Infant death)

In 2012, I was days away from giving birth to my third child, a girl named Olivia, when I started to feel unwell and run a low grade fever. I went to the birthing center to see the midwives who had cared for me during my entire pregnancy. They decided to admit me for observation. Unfortunately, since I was feverish, I was no longer a candidate for a birthing center delivery and had to be admitted to L&D in the hospital the birthing center was attached to.

The plan was to give me IV antibiotics while monitoring the baby and give me time to recover before delivering. The OB on call, which I had only met once, came to tell me she would be inducing my labor. I was not okay with this. My second delivery just 2 years prior, had resulted in some bleeding that resolved with Pitocin. While the hemorrhage wasn’t severe, I knew this put me at a higher risk of serious hemorrhage in subsequent deliveries and had brought this up at every third trimester appointment. I brought this up again to the OB at which time she started talking about chorioamnionitis, a serious infection of the amniotic membranes and fluid surrounding the baby. I argued that Olivia was looking fine and I’d rather follow the midwives’ plan of observation. This is when my nightmare began.

I begrudgingly agreed to a cervical check, at which time the OB informed me I was leaking amniotic fluid and she detected meconium. According to her, not only was my amniotic sac not intact, Olivia had experienced a bowel movement in utero and this was the cause of the infection. She convinced me that immediate induction was necessary to save Olivia. I was admitted and induction commenced. I was told I had to get an epidural because the infection was raising my blood pressure and they were afraid the pain of labor would make it dangerously high. So I was completely bedridden. Epidural in, Pitocin started.

A few hours later, the nurse informs me she’s going to break my water. My husband and I make eye contact, equally confused, having being told this had already happened. The nurse had no idea what we were talking about. There was nothing in my chart indicating ruptured waters or suspected meconium. When she broke my water she noted in the chart, “amniotic sac was intact, fluid was clear without presence of meconium upon rupturing.” No one was able to explain to me why I had been lead to believe otherwise.

Immediately after delivering Olivia, I knew something was not right. I was losing too much blood. I voiced this to the OB, who told me it was normal and left. I continued to tell the midwife I was hemorrhaging. I pulled my sheets over to show her, looked at my husband and told him I was going to pass out and not to let me bleed to death. It was then she began to panic. She called for the doctor but she was gone. She immediately began working to place a Bakri balloon while I was in and out of consciousness. While this bought me time until the OB could return, it didn’t stop the bleeding. As everything went gray for the last time, I didn’t expect to wake up.

When I awoke in recovery, my mom and husband had the difficult task of telling me they’d had to perform an emergency hysterectomy. Honestly, I was just relieved to be alive and happy I could start recovering. However, my condition continued to deteriorate. I was needing more and more units of blood and blood products. Despite my insistence that I was still bleeding somewhere, my OB refused to even consider the possibility. At this time, a general surgeon happened to be checking on one of his patients when my mom told him, “My daughter is dying in here, can you please help us?”

This is when my guardian angel, we’ll call him Dr. A, enters my story. He immediately agreed I was hemorrhaging internally and called for a stat ultrasound. The ultrasound showed that my abdomen was full of blood and continuing to distend. He knew that opening me back up at that point would lead to instant shock so he called an obstetrical oncologist, Dr. S, who was well known at that time as the expert in DaVinci robotic surgery. My only hope was him agreeing to use the robot through a small incision to try to locate and repair the bleeder. He agreed and assembled his entire OR team. In the mean time, I was continuing to receive blood products to counter the blood flowing into my abdomen.

Dr. S was able to slowly drain the blood from my abdomen - more than 5 liters - and visualize my right retro peritoneal artery open and bleeding freely. He closed it and repaired multiple other vessels that had been closed but were still leaking. I still went into hypovolemic shock from the loss of blood and had to be resuscitated twice. I woke up in ICU, again surprised to be alive.

I wish I could say my recovery started then. But, later that night I was having abdominal pain and nausea. As I started getting sick, the nurse quickly realized something was seriously wrong, as what was coming up was black. She placed a nasogastric tube (through my nose and into my stomach) and it continued filling containers with black fluid. My bowels weren’t working and no one could figure out why.

In the meantime, Olivia was having issues of her own. She’d been running a fever, which I later found out should have initiated immediate transfer to the nearby children’s hospital. They kept assuring us she was fine, but on day 3 they finally decided to transfer her. The head of the transport unit came into my ICU room with a solemn look on her face. She told me she could actually get in a lot of trouble, but she felt as though the hospital and not been honest about Olivia’s condition. She wanted me to know how serious it was. She’d had to be intubated for transfer. Then, she did something I will be forever grateful for. Against protocol, she wheeled the incubator into my room so I could tell my baby goodbye.

We lost Olivia when she was 4 days old. I had to find out over the phone, still struggling with my own deteriorating health in the ICU. It turns out, she had a viral infection and should have been started on anti-virals, not the antibiotics the hospital had been giving her for 3 days. I got to hold my baby twice during her short time on earth.

I remained septic, an NG tube continuing to relieve pressure in my abdomen and a central line delivering a cocktail of anything they thought might help. Dr. A was getting desperate, consulting infectious disease and even teleconferencing with physicians at the NIH and Duke. It wasn’t until ICU day 16 that we figured out the source of my sepsis. When my body went into shock from the loss of blood, my body had shifted what blood I did have circulating through my body to my vital organs, pulling it away from my intestines. This caused the death of a portion of my small intestine, leading to a perforation allowing my intestinal contents to leak out into my body.

I was taken to the OR for an emergency bowel resection. My incision started right below my sternum and ended below my belly button. I woke up with 25 staples keeping my abdomen together vertically, while still trying to heal from the horizontal hysterectomy incision below it. Dr. A was able to locate the dead intestine and remove a foot of my jejunum. Finally, recovery began.

I was released from the hospital after 30 days in the ICU. Weighing 94 pounds, trying to convince my stomach to accept food again, barely able to walk unassisted, and still needing daily blood thinner injections into my abdomen. Over the last 9 years since this happened, I’ve had 2 additional abdominal surgeries to address residual problems.

While I have physically recovered, the emotional and mental toll remains. I've been diagnosed with PTSD, anxiety with panic attacks, and depression.

My Motivation and Inspiration

The system failed me, repeatedly. It failed my daughter. One of the most eye opening aspects was the fact I was a healthcare professional. I KNEW the questions to ask, I was educated on the risks, I knew how to advocate for myself, and still, I was almost a casualty of multiple breakdowns in my care. If this can happen to someone with a high level of health literacy, what happens to those without it? This is why I advocate for improved maternal care. We have to fix the maternal and infant mortality rates in this country. I want to use my story to help make that happen.

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