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