Story #99 - Katie, MD (USA) - Blood Clots, Medical Malpractice, Induction, Postpartum Hemorrhage, Near Miss Survivor, PTSD & Maternal Care
In 2014, I got pregnant with my son. At around 24 weeks, I called my doctor complaining about pain in both of my legs. They told me it was just normal pregnancy stuff and to call back if I had any other issues. I gave them another call that evening, saying that the pain was now excruciating. Once again, the nurse triage told me that it was just "pregnancy stuff"... and to call later if I was still in pain. (Plot twist: I still was.) It was my first pregnancy, and although I didn't know what "normal pregnancy pain" was, I was very diligent about making myself hear and kept calling.
So I called again. By that third call, the nurse was exasperated and said, "Fine, since you've called so many times to complain, we'll see you tomorrow morning." You can't make that shit up.
I went in, and the doctor said, "I highly doubt you're having a real issue, but we'll do a sonogram of your legs just to rule out blood clots." My OB's office was in the same building as the imaging department, so I walked over there right after my appointment, which was the last of the day. The technician began doing her job, and after about five minutes, she stood and walked out of the room. Didn't address me. Didn't say anything. When she came back, she said, "Get dressed, you need to see the DO right now. She's leaving for the day and needs to discuss this with you immediately."
I walked out into the hallway of the office area and sat down with this person I had never met before. She said to me,
We just found bilateral blood clots from your hips to your toes. Thousands of them. You need to be anticoagulated immediately. Go to the emergency room, they're waiting for you.
I stayed at the hospital for four days. They were worried about the clots breaking off and moving to my heart or my brain. When I was discharged, the doctor put me on Lovenox [blood thinner] for the remainder of my pregnancy. I had to inject it daily in my pregnant stomach and did that until my water broke on December 2 at 11 pm.
All I had ever wanted as a first-time mom was to keep things as natural as possible. But I'm also a reasonable person, and I was aware that things don't always go as planned. The most important thing to me at the time was to know my baby would be safe. I know now that it's not that simple when it comes to reproductive health. When I got to the hospital, the nurse immediately wanted to start Pitocin. I was GBS positive but refused because I wanted to give my body a chance as my water had just broken. But she said it was protocol. I fought back a little, saying that I wasn't even contracting that much and barely dilated. I guess they just wanted to get the show on the road, and she kept pushing for the Pitocin. At some point, you think, "It's fine, I'm not a doctor, she must know what she's doing." I was able to labor without it until 9 am when the doctor showed up and ordered that I take medicine. At that point, I was exhausted because I'd walked all night, and as soon as they put me on Pitocin, the pain because excruciating. Because I was on Heparin [another blood thinner], an epidural is too dangerous to perform 12 to 24 hours after taking it. Since I had injected mine at 9 pm the evening before, I still had three more hours to go before getting any relief.
The team there knew about my history. And yet, nothing was really put in place in case I hemorrhage. I had a bit of understanding about what a vaginal birth vs. a c-section entailed, but surgery was kind of my scapegoat, and no one prepared me for that.
Around 6 pm, the doctor shows up and says, "Well, it's your choice but you've only dilated two or three cm after being on Pitocin all day. We can wait longer or we can go ahead and do the c-section." I remember asking him, "What's your opinion as a doctor?" They wouldn't exactly come out and say it, but I could tell he was ready for me to be finished and have the c-section to deliver this baby.
You have to understand that an epidural on Heparin is more dangerous than a c-section because if they miss or poke something, you bleed into your spine and can become paralyzed instead of your stomach with a c-section. It's a risk vs. benefits kind of situation. In their case, they believed they could control the bleeding if it occurred and use other drugs to reverse the Heparin. This drug also has a shorter window than Lovenox, so I believe they felt more comfortable, assuming the medication had worn off to a safe level.
I wasn't comfortable with any of the options. But at that point, I was also delirious from being sleep-deprived and in so much pain. I was heavily medicated and started to say the same things over and over again, which was a concern to everyone except the doctor. This was not an informed decision at all, but because I was so fearful of the epidural for the c-section, they told me I could be put under general anesthesia. They said, "You'll go to sleep and wake up 30 minutes later to your baby!"
It sounded fair, and I agreed. But instead of 30 minutes, I woke up three hours later. The baby was born fine, perfectly healthy. But throughout the surgery, my husband kept asking them, "You've said 30 minutes. It's been hours. Where's my wife?" And they kept telling him, "In recovery, she's okay, just groggy. You'll be able to see her soon." More hours passed, and he couldn't get to me.
To this day, I still don't know what happened during these three hours. I've requested my medical records and only received notes from the nurses. I've hired a lawyer who requested to view them, and the hospital was not forthcoming. They would only give half of them or older ones they already sent.
I have two full stacks of printer papers of incomplete records that don't always make sense. I don't want to make statements that would imply negligence because I don't remember. But neither my husband nor I know what happened during these three hours, and that black hole is a very traumatic thing to undergo.
I was eventually rolled to my recovery room after the c-section. I had never had surgery before, nor had I been under general anesthesia. I was so, so groggy when I woke up, which I guess was to be expected. But twenty-four hours later, the nurse came and told me I needed to start ambulating to prevent blood clots. I remember telling her that I couldn't because I felt so, so bad. She told me, "It's normal, you had surgery, but get up." My mom, who was also there with me, helped me sit down on the side of the bed with my feet on the ground. I remember pushing myself off the bed to stand up. When I straightened myself out, I felt a rush of warmth to my stomach. And I immediately knew what it was.
The nurse was standing in the room waiting for me to get to the bathroom, and I said, "I just felt a rush of warm blood in my stomach." To what she responded, and my mother confirmed these were her exact words: "That's impossible."
My son needed to get blood cultures to check for septicemia, so they were going to keep him for at least five days. They wanted to discharge me after two, but I refused: I wanted to stay with my baby. That's the only reason I stayed at the hospital, even after telling the nurse I believed there was blood in my abdomen. His pediatrician, who is also my primary care provider, pushed for me to stay with him, arguing with L&D that my insurance would pay for a fourth day regardless. In a way, he and my son saved my life.
From that point on, I was in excruciating pain for days. Mind you, after 24 hours, the doctor had resumed my blood thinner because of my pregnancy history. I was telling them over and over again that something was wrong, that I was in pain, and they needed to do something. Three days of constant complaining. I remember one time being absolutely hysterical. A nurse came in and just said, "Where is this coming from?" I had been telling them for days but didn't have the words or knowledge to explain what was going on. And that wasn't good enough for them.
At some point, the nurses stopped coming to check on me altogether. The doctors were only coming once a day for his round, and even though I was telling them that something was really wrong, they didn't run any tests.
I had my son on December 3 at 6:22 pm, and by December 8, I asked for the doctor to come to see me. They were pumping me full of fluids, and my body was retaining it. I had gained 23 pounds during my pregnancy but looked much bigger after giving birth. Everyone who simply looked at me could tell something was wrong. Finally, I got a nurse to change my sheets and check on me (they hadn't changed them since my c-section, and I was still sitting in my blood.) Normally, they should check the amount of blood you lose after having a baby by looking into the pads each time you change them. Everyone bleeds, whether you had a c-section or a vaginal birth. Like that, when you suffer from postpartum hemorrhage, you can often tell because your blood flow is much higher or completely absent. In my case, I wasn't bleeding out. I was bleeding in. Had they monitored me correctly, they'd have noticed that not enough blood was coming out.
By the fourth day, I was highly agitated. In a sense, being someone who's really outspoken saved my life. The hospital doctor I had asked to see never showed up. By 3 pm, I knew the offices were getting ready to close, so I called the OB's line. The receptionist asked me if I was home, and I said, "No. I'm still at the hospital. I just had a baby and the doctor will not come to see me. If you do not send one, I am going to die."
The receptionist thought it was a prank. I told her, "No, this is very serious. Please, send someone immediately."
By 4 pm, the hospital doctor finally showed up. He was pissed. Told me I got his entire office entirely upset and that I couldn't just call around saying that I was going to die.
For the first time in days, he pulled the gown up and saw a hematoma that was now coming to the top layer of the skin, where it was creating a large bruise around my incision area.
He said, "Well... we're going to do a CBC [complete blood count] now and see how much blood you lost." Hemoglobin numbers on a normal woman should be between 11 to 15. After a c-section, it's a little less, about 9. Mine was at 4.1.
I had lost two-third of my body's blood volume.
They did a cat scan, and the hematoma was so large that they had to evacuate it physically.
At this time, my in-laws, who had been at the hospital with us, were discouraged by how I had been treated, so they wanted me to transfer out. I never talked to the same doctors, and by then, I just didn't have my wits about me and was just going with the flow and with whoever would help me.
We talked a little bit with the new surgeon and asked him if he was confident about the procedure. He was like, "Of course, it's just procedure. Very routine." I decided to stay, but I told them, "If at any time during the surgery, something goes wrong, you were to close me immediately and put me in an ambulance to transfer me to another hospital." The doctor agreed to this.
After that, I was rushed to the OR. One of the nightmares I still have to this day is being wheeled down the hall on my hospital bed, then into the OR, and looking up to count the squares on the drop ceiling. The last thing I remember is having two male nurses suddenly appearing on my side and one saying, "She's tachycadic, put her out."
And that was it.
The plan was to evacuate the hematoma and put in a wound vac. It's a mechanical drain that mechanically pumps the fluid out. I woke up highly agitated due to the anesthesia, only to find myself packed with gauzes and not closed. My surgery had happened after business hours, and the hospital had forgotten to call the wound clinic for someone to install the vac. I was furious. Instead of transferring me, like I had requested, the surgeon packed me up with gauzes and then told me someone would come the next day to install it. When I was under, they also poked me seventeen times to find a vein for the IV. Seventeen. For two days after the surgery, I couldn't hold my baby because my arms were full of holes. They just used me as a pincushion.
After I woke up, I told the staff to call him into the recovery room to let him know how upset I was. When he got there, he simply told me, "Well, if you want me to close you up I'll close you up! Let's wheel you right back into the OR." But that's not what I wanted. I wanted to be respected as a patient. I wanted him to keep his side of the bargain and transfer me when I was still under anesthesia, so I wouldn't have to wake up with my abdomen cut open and packed with gauzes. I wanted to begin the healing process, not to wake up broken.
We fought for some time, and then he stomped out of the recovery room. I never saw him again.
After that, I remained incredibly combative. The timeline is blurred, but I know I didn't trust the staff. I felt like they were treating me as if I had asked to talk to the restaurant manager because I was dissatisfied with the food. But it's not like I could get my next meal free! We're talking about my body. When they went in to remove the hematoma, they had to open and then stretch the glued areas of my c-section incision from hip to hip. By doing so, they created massive amounts of scar tissue. The hematoma they found was 18 inches.
The wound woman came in early the next morning. She was not happy they hadn't called her when I was still under because the procedure is extremely painful. It was also 12 hours after the fact, and my body had begun to heal itself, growing scar tissue around the gauze. I was still highly sedated when she arrived, but I remember her looking at my incision and just going, "Oh God!"
I was not in the labor and delivery ward by then because of the type of surgery I had. I believe that L&D simply were not prepared to deal with the hemorrhage; as soon as they rolled me into the OR, they asked my husband to pack my stuff and were happy to see us go. The set of care I received in the post-op wing was better. At best, I'd say the nurses in L&D were overwhelmed; at worst, they were negligent. I had nurses come in telling me they were ready to give me my insulin when what I needed was blood thinner — the mother next door to me was insulin-dependant. It was a dangerous environment to be in.
The wound-woman was very sympathetic to my situation. She said to me, "I see you're on a pain pump. We took the safeguard off; press on that button every 3 minutes. I'll be back in a half-hour." She was basically telling me to give myself as much pain meds as possible because she was aware of how extreme the pain would be. When she came back, she was with another person who held me down as she unpacked me. I remember screaming despite being loaded with pain medicine and seeing the wound-woman cry as she removed the gauze. This was the first time I'd ever received empathy from someone at the hospital.
After she removed about twenty pieces of gauze, she installed the vac. And so, after having spent eleven days at the hospital, I was discharged and allowed to go home.
I came back on December 13. It was the holidays, and I had imagined celebrating Christmas with my new baby. It was supposed to be a happy time.
I had two blood transfusions at the hospital: one during my surgery and another after I woke up. I was on iron pills, and my blood count was still low — around six — after I was discharged. Then on December 31, I woke up in a puddle of blood. And when I say "puddle," I don't mean "my kids spilled a cup of milk." My husband had just come to bed after wishing me Happy New Year. When he saw in which state I was, he put me in the car and rushed me to a different hospital in PA because I didn't want to go back to the one where I'd given birth.
And then we waited. And waited. After sitting in the ER waiting room for hours, filling up pad after pad, the doctor finally came in to check on me. He said, "Oh, this is just your period." And he sent me home. No cat scan, no medication, no MRI, not even a sonogram to see if I had retained placenta or hemorrhaging again. Nothing.
The bleeding eventually slowed down. After that, I had a home nurse come over for three months to help me. She'd change my wound and show me how to care for myself. But it was sloppy. Most of the time, they didn't have the right supply. I remember one of them unpacking everything and realizing she didn't have what it took to change me. She had to go back to the hospital as I remained in my bed, my wound wide open. Once a week, I'd also go to the wound clinic to change the vacuum and scrape the inside to ensure there was no debris and I was growing back together properly.
During this entire time, I breastfeed my baby. I lasted four months. How I did it, I'm not sure, but I'm proud of having been able to do it.
It was a very dark time.
At my six-week checkup, the doctor told me that the amount of scar tissue caused by the surgeries and the packing/unpacking of the wound amounted to seven c-sections. Doctors don't perform more than three on birthing people, let alone seven.
I was bluntly advised not to have any more children. With the blood clotting and scar tissues, a pregnancy would be too dangerous. He said, "I can put an IUD right now if you'd like." My husband was also with me, and he was offered a vasectomy. It felt surreal.
I bled from January 1 to July, when I woke up in a puddle of blood once again. I was just losing blood non-stop. Sometimes it was like a normal period, but other times, I was filling pad after pad. So this time, instead of going to a local hospital, I went straight to John Hopkins. They admitted me right away. Gave me a blood transfusion, did a CBC and a sonogram. It took 24 hours to receive all the blood I needed. After reviewing my files, they realized I hadn't been given the full doses at the other hospital and was missing antibodies. Despite their large bank, Hopkins had trouble finding blood that my body wouldn't reject because I had had so many transfusions. Out of care — not out of preparation or negligence — they only had one shot at it. I remember the nurse telling me: "Don't get in a car accident. This is the last transfusion you'll have in a while."
They tested my thyroid, and I met with an endocrinologist. He had some students with him, and they explained that the normal testing rate is 0.04 and a high one would be a 4. I was at 1400. They believed that one of the reasons I might have been bleeding for so long is that the thyroid affects your hormones, and since it was so out of whack, it triggered endless periods. They said it was likely caused by undiagnosed pregnancy thyroiditis. How my other providers missed it? Who knows. To the credit of the doctors at Hopkins, they said that a quarter of pregnant people have pregnancy thyroiditis that is never diagnosed, but it usually goes back to normal after giving birth. Mine, however, didn't.
Miraculously, after I received the transfusion, I stopped bleeding. The OB and endocrinologist had come in and explained that if in 24 hours I was still bleeding, they'd do a manual exploration and a DNC. But we didn't need it, thank God, because it would have caused even more scar tissues.
As I went through it, I don't think I understood the magnitude of what was happening to me during my postpartum period. I was in shock, just trying to raise my first child, breastfeed him and still keep things as natural as possible. But I was in constant fight mode with my body. Hemorrhaging non-stop. And four months in, the postpartum depression just snuck up on me and lasted until he turned one year old.
You could not tell me that I was depressed. I was so angry — enraged — and I didn't believe it. I'm embarrassed by my behavior because I couldn't control myself. I was angry at the doctors for doing what they had done to me. I was angry at my husband for letting them do that. It didn't make sense because it was as much my decision as his, and as I mentioned before, I know for a fact that it's because I was outgoing and loud that I'm still alive. Had I been more private and quiet like I am now, I'm sure I'd be dead.
It might be out of line to say, but although Hopkins was a lot better in terms of care, no one asked how I was doing. I'm the one who self-diagnosed a year later and eventually spoke with my primary care provider. To his credit, he kept a very close eye on me even though I didn't want to get help. Then one day, the fog lifted.
Even after a year, I still needed heavy pain meds and had horrific nightmares. My primary care provider helped me navigate these emotions and process what had happened to me. He told me I was likely suffering from PTSD, and I'd say that I had to battle with that for another year after receiving the diagnosis.
I began to wean off the pain meds, which was incredibly hard. I've never gone to the pharmacy without a problem. There is so much stigma surrounding pain meds, and it's difficult to navigate. As if this was not enough, I also started to beep when going through the airport's metal detector. We discovered there is a foreign object stuck in my scar tissues that is also extremely painful. Over the years, I had done lots of therapy to handle the chronic pain and had injections to relieve some of the nerve pain, but nothing helped. I walked with a limp for the longest time because one side had more scar tissue than the other.
With all that was happening, I had resigned myself not to have more children. I used to joke when I met my husband that we would have 17 children, and the thought of not giving him more truly set me off. I was afraid of losing him, and I felt like I was failing in our marriage.
This event affected every aspect of my life: I could not work and had lost my job because I couldn't go back to work after the "normal" six-week period in the US. I used to work for a big company, so they could have been able to support me, but I received no help.
It took two years of my life to feel like I was only beginning to notice some real healing physically and mentally.
Then in May 2018, I became pregnant with my second child. I had been supposed to drive to DC to march with the other members of the Near-Miss Survivors Group I'm part of, but destiny brought me somewhere else.
There are only two OB practices where I live, and my insurance only covers one, so I didn't have much choice for my maternal care. On my first appointment, I asked if the doctor who did my c-section was still employed, and they said that not only was he still practicing, but that he had been promoted and was now running his own office in Greenbelt. That was crushing. I had lost two years of my life to postpartum depression and PTSD. Meanwhile, this guy had been given a promotion.
I met with another OB, a woman, and asked her to sign a transfer to Hopkins. We went through my whole history, which was obviously very traumatic to tell, and literally begged her to send me to Hopkins. She paused and said, "I am absolutely confident that I can handle the birth of this child. If you want me to refer you to Hopkins, it is not because I medically think you need to be seen by a maternal fetal specialist. I'm doing it as a favor and per your request."
I lost it. Became hysterical in her office.
Luckily, one of the other doctors there came in and said, "Look, if you want to be referred, I'll refer you. Your comfort is more important than anything else and you obviously don't want to be here." And so he signed the release, and I was able to see one of the best maternal-fetal medicine doctors in the US, Dr. Arthur Vaught. I also met with Dr. Angela Shaddeau, who is a fellow there.
My level of care significantly improved. They were medically on top of everything: they had the blood ready for my scheduled c-section and checked my pad — literally pulling my underwear down — every three minutes after birth. It was awesome.
Still, from a human point of view, I still saw glimpses. I say that with all the love in the world, but we still have a long road to go to make sure the care we give birthing people is excellent. For example, I requested a clear drape during the surgery, but they wouldn't let me "because it would upset me." I wanted to catch her, but they also refused. I'd asked to get my daughter on my breast immediately after she was born, and they said, "Oh sure," but instead, they screwed around with her for ten minutes, weighting her and measuring her head, telling me, "Just one more minute!" These things can wait. After they stitched me up, it took another hour to have her on me.
I think that doctors in general and OBGyn in particular have been trained to mentally remove themselves from the human aspect of care to focus only on assessing risks. It's not that they manipulate you to do what they want, but they often have made their decision beforehand, and they groom you into believing that it's in your best interest. They put little bugs in your ear throughout your pregnancy to make you more compliant when the time comes. It has nothing to do with Hopkins itself, and I know most of them don't do it on purpose, but it's distressing when you began to notice that you've been played.
The pregnancy itself went okay. I dealt with a lot of anxiety and stopped processing my feelings. I remember having vivid dreams and waking up in cold sweat or being anxious about what would happen to my incisions. Overall, the birth and postpartum went well because I knew what to look for and tried not to let my emotions flood and crash down on me.
My daughter came out perfectly healthy. The team at Hopkins did a fantastic job during the surgery and some more. They went in and snipped some of the scar tissue and did some repair, and I don't have the limping anymore. They also stitched me back in a way that makes the scar look a million times better. My surgeon called in one of her colleagues, who is renowned for making amazing stitches. It felt like they went above and beyond to make sure my surgery was seamless. I did hemorrhage again and lost two liters of blood, but my surgeon was able to catch it right away, and I did not need a blood transfusion.
See how that can be simple and non-traumatic when we pay attention and care for mothers?
Seven hundred women in the US die each year of preventable death. It's 60% of the maternal death that should not happen. And the way they get these numbers is not because hospitals disclose them, it's because they go through billing. They check for c-section, epidural, or unmedicated birth and then if you received a blood transfusion. We know birthing people die not because hospitals care enough to report it but because they bill your insurance. If you are transferred outside the maternity ward, you don't count in those statistics.
I myself wasn't accounted for since I've never received a bill. They didn't want me counted, so they didn't bill my insurance. It's that simple: if they don't charge you, they can skirt the system and not be held accountable.
I went back home with my daughter after only a couple of days. I breastfed her up to almost a year, which I'm very proud of after everything I went through.
Telling this story is still incredibly emotional, and I know my experience changed me as a person. I'm more private. We lost friendships because I was too sick and embarrassed to reach out for help. I thought I was failing as a mother, and I had failed my child and husband. Friends thought I was upset at them and stopped calling when, in fact, I was simply too ashamed to have any visitors.
There are very few people outside the survivor's world who know how extreme my situation was. I mean, people knew the facts, but the realm of the psychological and physical implications are difficult to imagine. For example, I lost a friend because she had invited me over after giving birth, and I guess she expected the same courtesy from me. I don't think she was even ready back then to have visitors, but there's this pressure to do this whole parade after you just gave birth. If it's necessary for some people, we shouldn't force new parents to host social gatherings. It's complete nonsense. After my daughter was born, we didn't have anyone for the first two weeks of her life. People were upset with me, but I was determined to stand my ground after everything I had gone through.
I have a beautiful relationship with my children now. My son is an old soul. I don't know if he knew something had gone wrong with his mother, but he never cried as a newborn. He was so calm and happy. Because I was so ill, we mostly hung out in bed for the first year of his life. I taught him his ABC and played a lot under the sheets. He's such a sensitive little boy, and I don't want to break that out of him. Quiet and snuggly boys exist, and we need to nurture that in them.
When I found out I was having a girl for my second child, I was a little bit sad, not because I didn't want one, but because of what women go through in their lives. I've been sexually assaulted, and I don't want that for my child. I'm trying to raise them as progressive as I can even though we live in a very conservative part of the country, and most of our families are very traditional. There's a framed picture of RBG in the living room because I want them to grow up with female idols. My bathroom walls are filled with photos of historical women. It's important for me to be surrounded by powerful and strong women. When I found out yesterday that RBG had passed, I collapsed onto the floor. I don't know how we'll do without her. It's a scary time. Trump's legacy will be 50 years of conservative Supreme Court. Let's not forget about that, even if he goes away in the next elections.
My daughter is a wild one. She's so adventurous, and it's fun to play with her. It's amazing how "easier" this postpartum has been compared to the first one. I often feel bad for my son and wonder if almost dying has affected him more than I can see. I don't want him to feel the burden of it. I feel guilty for the time we lost. I know I was the best mom that I could, but I hope he got everything he needed.
For the past six months or so, I've been working on telling my story. To try to compile it so that it's most effective in my advocacy work. I'm lucky to be supported by such an amazing partner and dad. Anybody else in their right mind would have asked for a divorce. It would have been absolutely reasonable. But not him. We didn't have sex for almost a year after my son was born because I couldn't physically do it, bleeding everywhere and being in so much pain. It has taken a toll on our marriage not to be physical with each other. These are the collateral damages we never talk about after you go through a near-miss.
To have met other women in the near-miss support group was incremental in my recovery. There's so much loneliness when you go through a traumatic event like that, that even if you have the strongest bond with your partner, the physical and mental pain is difficult to explain to someone who's never gone through it. These women know. They understand and can deeply connect about what did or could have gone wrong. This is rare.
I will likely deal with chronic pain for the rest of my life. I have good days and bad days, which is important for me to recognize. I learned how to process my trauma, and although it's hard to find a therapist here specializing in birth trauma, I see a grief therapist.
If sharing my story can help reduce someone's shame or depression by only one day, I know it'll be worth it. When you're in the thick of it, you have no idea what's about to come crashing on you. Discussing our stories might help decrease the stress and stigma associated with all things related to reproductive health.
No one deserves to suffer in silence.