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Wednesday
Nov142012

Amniotic Fluid Embolism Story

A few weeks ago, my daughter told me a work colleague of hers almost died at her birth and, in Meghann’s words, “if she’d have been at home, she would have died.” My family doesn’t say things like that lightly so I knew what had happened must have been catastrophic. Later, she told me the friend had had an Amniotic Fluid Embolism with Disseminated Intravascular Coagulation (AFE/DIC). The woman was still in ICU, so I let Meghann know the recovery rate was very low and to send good thoughts to her family who must be extremely distressed. The new baby was not in the NICU, so that was a good sign; the AFE/DIC happened after the baby was born, it seemed.

I kept asking after the woman’s health and she was recovering more and more. After time in a step-down unit, she went home and then the next I heard, Meghann was advocating a Blood Drive to replace the blood she’d used during her DIC experience and recovery. I asked how many pints of blood she’d needed and was told 36. Thirty-six pints of blood. That’s completely replacing the blood in the body almost five times.

In the Facebook thread on the Blood Drive, the woman herself, Michelle Moon, responded to me and I felt comfortable reaching out and asking if I could ask her some questions. I told her that I had a special place for AFE/DIC since it was the only maternal death I’d ever witnessed. She was gracious saying she wanted to help bring awareness to AFE/DIC and would be glad to share her story with me and my blog readers.

Amniotic Fluid Embolism is a rare obstetric event, occurring in 1 in 8,000-30,000 pregnancies. (Determining the exact amount is extremely difficult.) Maternal mortality reaches about 80%, but here in the United States, it is 61%. 50% of the women who die, die in the first hour. “Most women who survive have permanent neurologic impairment.” And 79% of the babies live here in the US, so the babies do fair better than their moms.

Disseminated Intravascular Coagulation is not just an obstetric event, but can occur with acute trauma anywhere in the body. A good explanation is:

“Normally when you are injured, certain proteins in the blood become activated and travel to the injury site to help stop bleeding. However, in persons with DIC, these proteins become abnormally active. This often occurs due to inflammation, infection, or cancer.

Small blood clots form in the blood vessels. Some of these clots can clog up the vessels and cut off blood supply to various organs such as the liver, brain, or kidney. These organs will then be damaged and may stop functioning.

Over time, the clotting proteins are consumed or ‘used up.’ When this happens, the person is then at risk for serious bleeding, even from a minor injury or without injury. This process may also break up healthy red blood cells.”

So when the person is in DIC, the body can no longer clot and the blood just flows. Unless it is replaced, not just with blood, but with other blood products (as you will see), the person will die.

In a homebirth, AFE/DIC is one of the risks women take, that there is zero chance of living if it occurs. If it happens before the birth, the baby will also die; it is a given. Homebirth midwives discuss this in in our apprenticeships and in school; it’s one of our worst fears. But, that so few women survive, even in the hospital, was always a comfort. And that those that survived were mentally incapacitated made the impending death even more… acceptable? Not that death is ever acceptable, but that if a woman was doomed to live as a vegetable (a horrid term), perhaps it was best she not live at all. It was what we said to ourselves.

But then along comes Michelle Moon; a mom who has not only lived through her AFE/DIC, but is not remotely mentally affected. (I will share her lingering affects below.)

Michelle was gracious enough to answer my questions and her answers in email were so straightforward, yet so impactful, I decided to share her story in that format. Here, in Michelle’s own words, is her story of her AFE/DIC.

“I am happy to share and help bring awareness to AFE/DIC.  It is one of those things that I never knew could happen.  You always hope and pray for a ‘normal’ pregnancy and birth.  This was my second pregnancy.  We have a healthy 4 year old girl (Bella) who was delivered in a hospital in a vaginal birth with no complications.

“My recent pregnancy was as normal and standard as the first.  I was healthy, ate right, and went to my scheduled appointments.  I went into labor on my own at home on Friday, September 28.  When the contractions were about 2-3 minutes apart we headed to the hospital.  After checking in I received an epidural, my water was broken by the doctor (NgM: a couple of hours before the AFE) and everything seemed to be progressing fine.  I was dilated to 7 cm.  Then all of the sudden I knew something was wrong.  My husband and mom were with me.  I remember jolting up in bed.  I started yelling ‘something is wrong, something is wrong, someone call the nurse.’  I still remember the horrible feeling of darkness that seemed to be creeping up my body. I remember I couldn't breathe.  There was this horrible dryness and warm sensation in my chest as I struggled to gasp for air.  I don't remember anything from this point until the following Monday-Tuesday when I woke up in ICU. 

There are a few parts that have come back to me from time to time.  But for the most part I was out of it.  My husband hit the nurse button right when I told him to.  Within 8 minutes from that point they performed a c-section.  Piper (our daughter) was not breathing when they pulled her out of my body.  They resuscitated her quickly and she is doing well.  We don't think she will suffer from any complications.  After the C-Section (Friday) I went into DIC.  Then Saturday, they opened me up again and did a second surgery to remove the extra blood and clots, then the final third surgery (Sunday) was a Hysterectomy which helped stop the bleeding.  I still have my ovaries, so no hormone therapy right now.

“I want to be sure to answer all of your questions.  Let me know if you need further information. I have pasted your questions and then my answers for each are below:”

Did you have any risk factors?
“Not to my knowledge.  My pregnancy seemed to progress just fine and I was healthy.  No complications.”

(NgM: Risk factors: “Several factors have been associated with amniotic fluid embolism syndrome. They include precipitous or tumultuous labor, advanced maternal age, cesarean and instrumental delivery, placenta previa and abruption, grand multiparity [≥5 live births or stillbirths], cervical lacerations, fetal distress, eclampsia, and medical induction of labor.” Amniotomy would not have been a risk factor.)

Induction?
“I was not induced.  Although, I was induced with our first daughter.”

Augmentation?
“”I was 41 weeks pregnant.  I went into labor on my own and was dilated to 7cm when everything happened.”

How did the AFE present?
See above paragraph”

Do you remember any of it?
“See above paragraph.  For one of the surgeries the doctors were afraid to sedate me with anesthesia because my heart rate was too low already.  They gave me some light sedative but did not completely knock me out.  This is one of the memories from the weekend that I have. I woke up during the surgery and saw the doctors and nurses above me.  I started to shake my head ‘no’ back and forth to alert them that I was awake. Someone held my head and stroked my hair to calm me down.  The other memory from the weekend is when I woke up to find the family Deacon standing over me giving me my last rights.  We are Catholic.  Talk about terrifying.  I remember thinking to myself (since I couldn't talk, not enough energy) ‘Oh,hell no... I'm not going to die.’”

What's the last thing you remember and the next thing you remember... what's the time spread between then?
“See above paragraph - Friday to Monday I was not really coherent.  I woke up in ICU with a tube in my throat to assist me with breathing.  I was pretty drugged up in the ICU so I slept a lot.  I remember having to write messages to communicate and asking if I was going to die.  I was terrified.  I was so swollen after all of the surgeries.  I had gained 40 pounds of water weight.  My eyes were so swollen I could barely see through them when I first woke up.”

Did you think they were lying when they told you how many pints of blood they put in you?

“It really is unbelievable to think about it.  I never in a million years would have thought that I would need that much blood products.  I received 36 units of red blood cells, 22 units of platelets, 12 units of fresh frozen plasma, and 8 units cryo.”

What effects have been lingering?
“My body was pretty weak after everything happened.  I was in ICU for 7 days and in Post-Partum Recovery for 6.  I am now 5 weeks removed and not in much pain. I stopped taking the pain meds last Friday.  It was 5 days after the last surgery before they allowed me to work with PT and I sat up in the bed for the first time.  It was day 9 before they let me stand up and try to walk a few steps.  My muscles are completely gone in my legs.  I walked with the assistance of a walker for a few weeks.  Now, at 5 weeks I can walk unassisted; however, my feet and calves bother me. My feet cramp and my calves feel heavy and tighten up.  I am Anemic and take iron supplements 3 times a day.”

Are they from anemia?
“Yes, very tired. I was resting a lot at first.  Now I am able to get around the house pretty well and just get exhausted at night.”

Or from other organ failure issues?
“Yes, the hardest hit organ were my kidneys.  At one point my kidneys only had 10% function.  I received dialysis when I was in ICU.  They were able to remove 2.5 liters of fluid.  My Creatinine was 6.9 at the highest and slowly has been lowering.  At week 3 my creatinine was 1.32 and they gave my kidneys an estimated function of 47-50%.  We will re-draw blood in two months to see where my kidney function plateaus.  My Nephrologist is hopeful that the kidneys could fully recover given my health and age (31).”

Are there lifelong residual issues you will have to watch for?
“At this point they say I will just need to be careful and monitor my Kidneys.  Even if they do make a somewhat full recovery, one dose of over the counter Aleve, Advil, etc. could poison them and send me back into renal failure.”

Are you nursing?
“Unfortunatley no.  I had planned to and did successfully with our first daughter.  They started to pump my breasts the first few days in ICU but it was becoming stressful for me.  So we decided since I was still not out of the woods to allow my body to heal and recover without the added stress or task of the breast feeding.  I was so full of meds that they had to dump everything they pumped.  We didn't know when the milk would finally be safe enough to give to Piper.”

Is there anything about your recovery that you want others to know about that you don't get to share too often because no one asks about it? Like sex has been impossible because of headaches or you can't lift anything more than the baby still (just random thoughts).
“The doctor's used the same incision for all three surgeries.  A few days after being released from the hospital the incision opened up.  I received a KCI Wound V.A.C. to help the wound heal.  It's been on for 2.5 weeks.  They say it should close within the next two weeks.  I can't even imagine having sex right now.  I'm still in recovery.  I'm also nervous about it.  So we will just wait on that one.  I am not supposed to lift anything heavier than Piper for another week or two.  I'm pretty weak still.  It wasn't until this past weekend that I could dress myself from the waist down or put my socks and shoes on.  I am scheduling an appointment with an Internist to look into my feet and calf cramps.  I really don't get too many headaches.  I did at first, especially when I was in ICU.  But maybe just once a week.  I attribute them more to eye strain.  They happen when I watch too much tv.  I have had a twitch in my right eyelid since this all happened.  I noticed it goes away when I wear my glasses.  The doctors think the eye muscles might have suffered some neuropathy. I remember I had a few strained blood vessels in my eyes when I was in ICU.”

I happened to travel to San Antonio this last week and was able to meet Michelle and her daughters in person Monday. It was such a privilege to take a few minutes out of her day to take a picture of her and the baby.

She certainly didn’t look like a woman who was so near death a few weeks ago. Talking with her, I learned she had help at home for several hours in the morning and then in the afternoon as well for several weeks. She’s weaned off the help gradually and this week is her first week without help at all during the day; her husband is there at night. She has a meticulously beautiful home and it was clear her four-year old daughter has been an enormous help to her through this.

AFE/DIC still is a risk in any birth and while there are risk factors, they are more risk guesses than anything. It’s true. If Michelle had had a home birth, neither she nor the baby would be here today. It is a risk one takes in choosing a home birth. A miniscule, but real risk. Those  who choose home birth weigh the risks and benefits of other more common experiences such as  lowering their chances of having a cesarean, being permitted a VBAC or having a provider who respects their wishes in birth. To them, the benefits outweigh the risks of possible death from something as obscure as AFE/DIC.

Even so, I felt it was crucial to bring a face and a name to a catastrophic obstetric condition midwives and obstetricians alike dread. I can’t thank Michelle enough for allowing me to tell her story, in her own words, which were more powerful than anything I could have written. Her story finally erases the horror of the birth/death I saw back in 1987.

Thank the Universe for modern medicine.

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Reader Comments (16)

It truly is almost unbelievable that people can survive this. Working at a hospital for several years now, I have worked with a few moms postpartum who have experienced AFE and/or DIC, and known of at least one maternal death from AFE. Those volumes of blood are also unbelievable, but seem consistent with the other cases I am familiar with.

We have had one mom that I can think of go on to bring in close to a full milk supply, but it took her weeks of pumping before her body recovered enough to let that happen. Breastfeeding/pumping unfortunately usually is a casualty of a very complicated and taxing recovery; these moms need to focus completely on getting better and don't have the time and energy to spare. Sad because it is another part of "normal" that these moms and babies lose, but small in the end as it's such a miracle they are even there to watch their babies grow up.

I am so grateful Michelle is with us today, and it certainly sounds as though the embolism would have presented itself no matter her place of birth, so we can be grateful that she happened to be in the hospital.

However, I think some of what was written here was a bit misleading and problematic. It sounds as if women are choosing between autonomy and "minor" or "manageable" physical risks, such as C/S, and a very small but real chance of death. However, as you noted, some of the risk factors for these conditions are those more likely to occur in a hospital (induction, C/S), which we know are at least sometimes "unnecessary." Therefore, one could say that one of the reasons some women choose homebirth is the fact that it may present a lower risk of AFE in the first place. And while certainly the chance of a "good" outcome is better in the hospital, and thank God Michelle is well, the chances are relatively low either way, as you noted.

November 14, 2012 | Unregistered CommenterBuko

Thank you for posting this story and the picture of this very much alive woman and her baby. It is troubling that this could have happened with absolutely no risk factors. I am so glad the outcome was good. I don't think any home birth advocate would want to be that rare statistic where this could happen to them. It does bring an interesting focus to the whole issue.

November 14, 2012 | Unregistered CommenterLaura

I am actually wondering why AROM is not associated with AFE, or, perhaps it is, but that AROM is SO common that it has never been addressed as a possible cause? I thought about this because I recently read a post on Green Med Info about inductions, and AFE is of course a risk factor. Here is the last paragraph-
"Consider this case, of a typical, routine induction: a 40-year-old woman with an unremarkable obstetric or medical history admitted at 41+ weeks for induction due to reduced fetal movement; fetal head down; estimated fetal weight 3600g; cervix not effaced or dilated.

The woman was induced with three prostaglandin E (PGE) doses over 16 hours. Epidural analgesia was administered. At 7 cm membranes were artificially ruptured. Ten minutes later the cervix was fully dilated and the patient started pushing. Respiratory distress appeared and the patient was ventilated and intubated, then died of amniotic fluid embolism (33). "
here is the article, with references
http://www.greenmedinfo.com/blog/surprising-lack-evidence-postdate-birth-induction

Is it possible that AROM is in fact a risk factor? How can AFE happen without an "injury site"? What would the injury site be in a normal, vaginal birth? Is there any data for the rate of AFE at homebirths?
I'm glad that the mom and baby are okay; I would have died if this had happened to me, as I do not accept blood products at all.

November 14, 2012 | Unregistered Commentersara r.

I read your AFE/DIC story prior to my HBAC and it was, in fact, one of the extremely rare events I feared and knew I was risking (along with a sudden and catastrophic rupture.) As I told my family, I was definitely taking the tiny chance that something would go so horribly wrong so fast that my midwives could not handle it by transporting me. I weighed that knowledge against the strong possibility of an avoidable c-section in the hospital, and the very real and serious and more common risks that would entail. I also considered the factor that such a rare and immediately catastrophic event was likely to kill me or worse even if I *were* in the hospital.

This isn't straightforward math to do, which is why different people come up with different answers. I'm fortunate that I had the option of highly experienced, Florida licensed midwives.

It's no fun, thinking about ways that you might die or suffer irreparable brain damage. There are so many what-ifs in her story... What if she had been alone in her room... What if the ORs were occupied... What if she had stayed home a little longer and was in the car when it happened, holy mother of god, can you imagine being a partner in a car when all of a sudden your laboring love passes out and then bleeds to death from everywhere? Jeeeeeeeez. No good. Yikes. I try not to think about these things too much, like how I try not to imagine horrific car crashes while I'm driving :(

November 14, 2012 | Unregistered CommenterKaren

Thank you for bringing attention to AFE/DIC and sharing Debbie's story of survival. As an AFE survivor and the founder of the AFE Foundation (www.afesupport.org) her story is one that is hard to read but we are so thankful for the outcome.

We encourage you to visit our website and join our FB page at www.facebook.com/amnioticfluidembolism. Soon we will be offering a library of resources for practioners to gain vital access to the latest research.

Also, for those who have patients who suffered an AFE we are seeking their cases for our IRB approved patient registry. It is the only registry of it's kind in the US and is the only active international registry.

Kind regards,
Miranda Klassen
miranda@afesupport.org

I am so glad (and amazed) that Michelle and her baby survived this and is doing well. What a scary, scary thing.

However, i am puzzled by one thing. in Michelle's words: "I was dilated to 7 cm. Then all of the sudden I knew something was wrong. My husband and mom were with me. I remember jolting up in bed. I started yelling ‘something is wrong, something is wrong, someone call the nurse.’ I still remember the horrible feeling of darkness that seemed to be creeping up my body. I remember I couldn't breathe. There was this horrible dryness and warm sensation in my chest as I struggled to gasp for air." This would seem to indicate that this is where it all started. But you point out that this was two hours before the AFE occurred, after the c-section.

How do you think she knew and felt so early that something was going wrong? And it seemed like this early awareness--her giving voice to it--may have helped save her life as well?

November 18, 2012 | Unregistered CommenterEdythe

Amazing. I have seen one AFI & that was in 2007. It was horrendous. The woman survived, as did her baby & recently had her 2nd baby. A happy ending.

November 18, 2012 | Unregistered Commenterliz

Wow. I cannot even imagine. Thanks for bringing the story to life.
I'm wondering if potassium might help with the cramping? For me, I hate bananas, but if I ever get leg or foot cramps, I make banana muffins. Two bananas for more than a dozen muffins, and I eat only one or two, and that's enough for relief.

November 20, 2012 | Unregistered CommenterTracyKM

AFE is truely scary, but thankfully a rare event. To answer some of the questions above, we don't really understand the risk factors for AFE. Because it is such a rare event we can only look at case series and search for common circumstances but we don't have anywhere near the numbers to be able to control for confounders. The "risk factors" that are listed may not be risk factors in the sense that they "cause" AFE but simplly events that occur around the time of AFE and we don't have enough data at this point to draw conclusions. Remember, association does not equal causation. That is why the AFE registry is such an important project.

The syndrome associated with AFE is not entirely understood but cases follow a predictable pattern. The first event is the embolism which sets off an immunologic reaction resutling in pulmonary hypertension and acute right heart failure. This syndrome is difficult to treat and is responsible for those deaths in the first hour. Women that survive this go on to predictably develop left heart failure and DIC over the next hours.

Her feelings of something being wrong and creeping blackness are pretty consistent with stories of other women who have had AFEs. SOB, chest pain and a feeling of doom are all common and are due to early right heart failure and pulmonary hypertension prior to loss of consciousness.

Modern medicine can be miraculous. Rapid c-section in this case saved the child's life and also improved the ability to resuscitate and support the mother's physiology. The availability of medications to support the heart, echocardiography to monitor heart function, fractionated blood products and ICU care were lifesaving. There have been case reports where women with AFE have been rescued by cardiopulmonary bypass/ extra-corporeal membrane oxygenation (ECMO) to allow their heart function to recover. These are extraordinary measures but the victems of AFE are young healthy women with a good ability to recover if they can be supported through the crisis.

I find the fatalistic attitude towards the AFE syndrome you learned from midwives quite disturbing. With modern therapy these young, generally otherwise healthy women, can have good outcomes and I would hazard that mortality rate from AFE is decreasing with greater awareness of the syndrome and improvments in medical technology. Neurologic impairment also doesn't necessarily equate with a vegatative state. It can mean minor, moderate or major problems with mobililty, speech, vision etc and in AFE commonly results from watershed strokes due to poor circulation. Many women would continue to have an excellent quality of life and adapt to those sorts of neurologic injuries and the fatalistic idea that "lots of them will die anyway and those that don't will be vegetables" is, IMO, completely inappropriate.

November 22, 2012 | Unregistered CommenterTAM

TAM: Thank you for that information and your thoughts about AFE... they are welcome and mean a lot. The more I learn about AFE, the more distressed I am about my own previous attitude about AFE in home births. Sometimes, justifications are just wrong.

November 22, 2012 | Registered CommenterNavelgazing Midwife

When we discussed AFE/DIC at the B.E.S.T. Conference I attended last December, several of the midwives had witnessed one and all had one thing in common with their stories: that the woman sat straight up in bed and said "Something is wrong, I'm going to die!" I have been haunted by that. AFE/DIC was not something I even considered when I planned my home birth in 2009, but it is one of the things driving me to have a hospital birth in future. Sure, it's probably not going to happen... But what if...

November 25, 2012 | Unregistered CommenterLindsey

It definitely gives one pause, doesn't it. If I was having babies now, it would be very interesting to know where I would have my babies. Of course, I wouldn't have all these years of knowledge and experience in hospitals under my belt -and comfort in them- but still wonder if I would have thought more about having a hospital birth than I did before. Although I was supposed to have Aimee in the hospital, so guess I wasn't *so* against it, right?

Definitely a lot to think about.

November 25, 2012 | Registered CommenterNavelgazing Midwife

AFE from my understanding is when amniotic fluid gets into the mother's intravascular system. The amniotic fluid causes an immune response that then causes the embolus then DIC. I always thought the risk factors leading to AFE were due to an event where a lot of blood vessels are exposed (placenta) and amniotic fluid are experiencing some sort of pressure gradient change that shoots amniotic fluid into the mother's intravascular system. AROM by itself isn't enough because the blood vessels aren't exposed like they would be in a precipitous birth or placenta previa/abruption. By the way I was told that if there is meconium in the fluid the mother will not survive. Does anyone have data on this?

November 27, 2012 | Unregistered CommenterL/D nurse

I'd never heard that before, but if all the mechanisms they think happen are in play, it would make sense. I would love to know if that's true, too.

November 27, 2012 | Registered CommenterNavelgazing Midwife

In response to the question regarding the Meconium from L/D Nurse. I did have Meconium in the Amniotic Fluid.

December 2, 2012 | Unregistered CommenterMichelle Moon

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