It started on August 1. Apparently I had gotten up early in the morning and had some bleeding. More than what would be bloody show. I had called Matt at work and he came home, and somewhere along the way he called my mom and his mom, who was going to watch the kids at our house for us.
But after some monitoring, Lucy wasn't head down anymore. She had been head down, ready to go, at every damn visit. She was ready to go when I got to the hospital. For some inexplicable reason, she decided to turn sideways. The doctor gave me some options: c-section right now or try to turn her.
And at 3:12 p.m., Lucy Louise was born via emergency c-section, swollen faced, adorable, and with dark hair.
The first phase is characterized by rapid respiratory failure and cardiac arrest. It is noted most fatalities from AFE occur during the first phase.
The second phase is known as the hemorrhagic phase. The mother begins to bleed profusely at the wound site; typically at the site of placental attachment or cesarean incision. Disseminated intravascular coagulopathy (DIC) or consumptive coagulopathy develops, which prevent coagulation.
AFE is so rare, most medical professionals learn of it only in textbooks. The statistics around the incidence of AFE vary; recent research suggests that the estimated incidence of AFE is 2.5 in every 100,000 births or 1 in 40,000 deliveries in North America and 1 in 53,800 deliveries in Europe, respectively. There is currently no available data on incidence of AFE in other regions of the world. The true incidence of AFE is difficult to determine because the diagnosis of this syndrome remains one of exclusion, meaning that a diagnosis of AFE is made after all other reasonable explanations have been ruled out.
Thankfully, they had a banner team of doctors right there because the fact he saw that so quickly was key. They were able to give me the medication I needed and basically resuscitate me within minutes.
But then I started hemorrhaging. I had to have multiple blood transfusions and the doctor who delivered Lucy said things got really scary because they couldn't get my blood to clot at all. All of my systems were failing, and they made a quick decision to essentially clamp the blood flow going to my uterus and that eventually worked.
Once the hemorrhaging was controlled, and my vital systems were doing OK, I was then brought to the ICU.
And my mom got to meet Lucy. She has been there for the birth of all of my children. She said seeing me in the ICU was horrifying and reminded her of when my uncle David passed away. Matt hasn't really talked about what it was like for him to see me in there. But thankfully, I had really great people working on me.
Among the survivors of AFE, most will experience long term or lifelong complications. These include but are not limited to mild to severe neurologic impairment, memory loss, temporary or permanent heart damage, organ failure, complete or partial hysterectomy and Sheehan’s syndrome. Infants may experience, mild to severe neurologic impairment, including hypoxic ischemic encephalopathy (oxygen deficiency to the brain) and cerebral palsy. Further research is needed to fully understand the potential long-term medical effects of AFE on both mothers and infants.
In addition to medical complications, most AFE survivors experience lasting emotional effects after this traumatic event. Feelings of confusion, isolation, anxiety, postpartum depression and post-traumatic stress are common. Seeking support and treatment for mental health issues is a very important aspect of the overall recovery process, and we recommend that women consult with their health care providers for mental health resources.
The anesthesiologist who was the lead on my delivery asked if my particular experience could be used in research, so that's actually being submitted.
Earlier this week I met with the doctor who delivered Lucy just to hear what the hell happened. I'm really struggling with the mental health side of almost dying and I thought maybe if I heard the blow by blow account it would be a good springboard to recovery. As it turns out, it's a really surreal and bizarre experience to hear about your death and revival in a very clinical, matter of fact way. Thankfully the doctor was absolutely lovely and so supportive. She told me that if Lucy hadn't turned, if I had delivered vaginally on the delivery floor and I had the embolism, there is a 99% chance I would be totally dead. They wouldn't have had the resources they needed on the floor and they couldn't get me into surgery fast enough to stop me from bleeding out right then and there. Not just that, but the anesthesiologist who recognized what was happening to me? If he didn't remember the one chapter in one textbook about amniotic fluid embolism? I would have died. She said most doctors will go their entire career and never even hear about this, and it's true, every doctor who I've seen since all tell me how incredibly rare this is and how lucky I am. That someone, somewhere is watching out for me because there is no reason I should be here right now. I should be dead.
Which is a really alarming, horrifying, terrifying, and sobering thought.
So in the aftermath, we have our Go Fund Me account, which is basically how we're paying our bills right now. Matt has had to reduce his hours at work a LOT because while I can function well, and I'm not an invalid, I'm nowhere near ready to be alone at home with four kids. Not even just the younger two. And it's weird, I feel like I'm pretty OK, but then there are points in the day where I don't remember when I fed Lucy last, or I space out a bit. I hate not being able to be 100% independent, but I do know I need help right now. Anyways. So Matt's paychecks barely pay our mortgage so financially things are really stressful right now. I have only gotten bills for doctors who came after my ICU stay, the actual hospital bills haven't come yet and our insurance sucks, so I can hardly wait. Not to mention all of the medication I'm on? It's EXPENSIVE. I seriously get it when people say they debate medicine versus food. I get it, and it's awful. I'm with you, folks.
As for me, I have Sheehan's Syndrome, which is pretty common for AFE folks. I'm being referred to another hospital to get a second opinion on my neurological impairment and basically see if things are going to get better. One doctor seemed confident that my memory would just get better and better over time. Another doctor said she things I'm permanently impaired, that I'm always going to be kind of fuzzy. Both agreed that I won't ever remember the time I was in the hospital. I think that's the hardest part- I don't get to enjoy Lucy's birth, my last baby, like that experience was stolen from me. Needless to say, I have a lot of things to work through. I'm getting help soon though, so that's something. I'm still foggy. I'm trying to get out of the house more, though. There have been a few times where people have stopped me to say hi and it takes me a bit to register who they are, which is frustrating. I hope that gets better.
But that's the best I can give you. I wish I could give you super detailed information because that's more of my style, but this is the best I can do.