June
2005
Amniotic Fluid Embolism
A month ago I wrote about the death of a co-workers wife. Recently I found out the cause of death was from an Amniotic fluid embolism. The following is taken from the eMedicine online medical database:
Background: Amniotic fluid embolism is a rare obstetric emergency in which amniotic fluid, fetal cells, hair, or other debris enter the maternal circulation, causing cardiorespiratory collapse.
In 1941, Steiner and Luschbaugh described amniotic fluid embolism for the first time after they found fetal debris in the pulmonary circulation of women who died during labor.
Current data from the National Amniotic Fluid Embolus Registry suggests that the process is more similar to anaphylaxis than to embolism, and the term anaphylactoid syndrome of pregnancy has been suggested.
The diagnosis has traditionally been made at autopsy when fetal squamous cells are found in the maternal pulmonary circulation; however, fetal squamous cells are commonly found in the circulation of laboring patients who do not develop the syndrome. In a patient who is critically ill, aspirate of the distal port of a pulmonary artery catheter that contains fetal squamous cells is considered suspicious for but not diagnostic of amniotic fluid embolism syndrome. Do not neglect other causes of hemodynamic instability.
Pathophysiology: The pathophysiology of amniotic fluid embolism is poorly understood. Amniotic fluid and fetal cells enter the maternal circulation, triggering a 2-phase process. In phase I, pulmonary artery vasospasm with pulmonary hypertension and elevated right ventricular pressure cause hypoxia. Hypoxia causes myocardial and pulmonary capillary damage, the left heart fails, and acute respiratory distress syndrome develops.
Women who survive the above events may enter phase II. This is a hemorrhagic phase characterized by massive hemorrhage with uterine atony and disseminated intravascular coagulation (DIC); however, fatal consumptive coagulopathy may be the initial presentation.
Frequency:
- In the US: Incidence of amniotic fluid embolism is estimated at 1 case per 8000-30,000 pregnancies.
- Internationally: Incidence is similar to that of the United States.
Mortality/Morbidity: Maternal mortality approaches 80%. Mortality was 61% in the national registry, which listed 46 cases. Five to 10% of maternal mortality in the United States is due to amniotic fluid embolism. Of patients with amniotic fluid embolism, 50% die within the first hour of onset of symptoms. Of survivors of the initial cardiorespiratory phase, 50% develop a coagulopathy.
Survival is rare. Most women who survive have permanent neurologic impairment. Neonatal survival is 70%. No evidence indicates that survivors are at risk for amniotic fluid embolism during future pregnancies.
Race: No racial or ethnic predilection exists.
Sex: Amniotic fluid embolism only occurs in women.
Age: Previously, advanced maternal age was believed to be a risk factor. No relationship to age has been found in the National Amniotic Fluid Embolus Registry.
History: Amniotic fluid embolism usually occurs during labor but has occurred during abortion, abdominal trauma, and amnioinfusion.
A woman in the late stages of labor becomes acutely dyspneic with hypotension; she may experience seizures quickly followed by cardiac arrest. Massive DIC-associated hemorrhage follows and then death. Most patients die within an hour of onset.
Physical: In case reports, patients are described as developing acute shortness of breath, sometimes with a cough, followed by severe hypotension. The following signs and symptoms are indicative of possible amniotic fluid embolism:
- Hypotension: Blood pressure may drop significantly with loss of diastolic measurement.
- Dyspnea: Labored breathing and tachypnea may occur.
- Seizure: The patient may experience tonic-clonic seizures.
- Cough: This is usually a manifestation of dyspnea.
- Cyanosis: As hypoxia/hypoxemia progresses, circumoral and peripheral cyanosis and changes in mucous membranes may manifest.
- Fetal bradycardia: In response to the hypoxic insult, fetal heart rate may drop to less than 110 beats per minute (bpm). If this drop lasts for 10 minutes or more, it is a bradycardia. A rate of 60 bpm or less over 3-5 minutes may indicate a terminal bradycardia.
- Pulmonary edema: This is usually identified on chest film.
- Cardiac arrest
- Uterine atony: Uterine atony usually results in excessive bleeding after delivery. Failure of the uterus to become firm with bimanual massage is diagnostic.
Causes: Forty-one percent of patients in the national registry had a history of allergies, and amniotic fluid embolism was more likely with a male fetus. The condition is considered an unpredictable and unpreventable event, and the cause is unknown.
Rodney
Rodney's News
RSS feed
Link
Today (Feb 9th 2006), I attended the funeral of a very close friend who was only 41yrs old and had died after giving birth to the first of her twins. The cause of her death was Amniotic Fluid Embolism. Apparently, after giving birth to her first baby, she was handed the baby to cuddle. After kissing her new bub, she handed the baby back to her nurse and just “slipped away”.
This funeral was one of the most saddest events that I have ever attended in all of my life. The church was absoluntely packed with grieving family and friends. She has left behind a heartbroken, devoted husband and 5 motherless children (including the surviving twins - a boy & a girl), who are doing very well although still in the hospital.
Can somebody around the 40-42 age bracket, who intends to have anymore children, and who are under the “At Risk” category, be monitored throughout their pregnancy in an attempt to detect and cure the onset of such a terrible condition? I would be very interested to know and would appreciate any feedback.
I just wanted to mention that I am a 56-year-old survivor of AFE. I experienced it with my first child. It is the kind of thing that cannot be predicted in advance but a common factor is tumultuous labors, although I have heard of someone having twins and C-section died of it about 10 years ago. With me I was on a Pitocin drip and I think that partly was responsible. Also the rupture of the membranes was high, with closer access to placental veins, etc. I started with symptoms after my child was born but spent 6 hours in the delivery room, unconscious for about half that time. I got 7 to 8 pints of blood in the delivery room, some packed cells and some units of fibrinogen because the fibrinogen gets depleted in this syndrome. I consider myself lucky to have had a capable OB that was quick thinking and doing as much as he could plus the anesthetist in the delivery room had seen this syndrome once in all her years in the delivery room. But I consider my own survival to be a miracle from God because I know what the odds are. Any questions about this I would be glad to answer. I know in the hospital I asked what causes this syndrome and they said they didn’t know but it was easy enough to find out the causative factors by reading some books in a unversity library. Greta Michaleski
I too am a survivor of amniotic pulmonary embolism. I was 18 yrs old. They put me on a pitocin drip for failure to progress as fast as they would have liked. I believe the pitocin caused me to have a tetanic contraction. I remember feeling like I was drowning. They did an emergency C-section. The baby was fine. I was in the hospital for 6 wks recovering. I Know that I and my baby are a miracle. God spared our lives. I tell everyone of God’s mercy and to avoid pitocin at all costs.
A good friend of mine had an incident of AFE while delivering her second baby yesterday. She is still on a respirator and in the ICU. It seems she is now stable and semi-responsive — not in a coma but heavily medicated.
We are all scared but hopeful. It is a miracle she is still alive now. And, we are optimistic that she is “out of the woods” since they are controlling the bleeding (her blood would not clot) and thinking that they’ll try to wean her off the respirator tomorrow. I wonder, if anyone knows, what the chances are now, and what things we should still be on the lookout for?
TIA
My beautiful baby girl & I survived AFE and DIC. My delivery was induced, and my mom who was a delivery nurse thinks the pitocin was responsible. The DIC occurred during my unplanned c-section. It’s a miracle that I’ve recovered from full renal failure, and that I only spent 8 days in CCU.
Greta & Darla, do either of you find that you’re more suceptible to respiratory illnesses? In less than 2 years since my daughter’s birth I’ve had a couple of week-long chest colds and a nasty bout with bronchitis.
Jen: in answer to your question about respiratory infections, I did get the London Flu and pneumonia about 10 months after the birth (1973). I was 22 when this happened. That is the only time in my life that I have had pneumonia but I thought it was just from my weakened state the previous year, taking at least a month to recover after the birth of the baby, and then two months later I got hepatitis from the blood or fibrinogen that I was given. Jen, it sounds like you got fibrinogen too. I was in ICU for only 4 days and then left the hospital 8 days after the birth so I recovered quite well considering the point that I had come to. I had two more children after this and there were no complications with them though the staff said because of the transfusion and development of high antibody titers if I ever got blood again I would probably have a bad reaction. I consider the Pitocin was responsible more than anything else; with my successive deliveries I let it be known I was never to receive Pitocin again.
I am an AFE Survivor and moderator of an on-line support group for survivors of AFE as well as families and friends of women who did not survive. There are now 108 of us. If any of you haven’t found us yet, please join us! Or pass on the information to anyone who would be interested. http://ca.groups.yahoo.com/group/amnioticfluidembolism/
Audrey - I’m so sorry to hear about your friend. I’d say the fact that she survived this long and is semi-responsive is a very good sign. The fact that they are considering weaning her off the respirator so soon is very positive. AFE is an odd duck. It affects everyone differently. Some women in our group were actually in comas and are fine. Some have brain damage and difficulty functioning. Some came through, like me, with only a short ICU and hospital stay and no real lasting effects. I think all you can do is wait and hope. It really depends on how long she was without oxygen and/or what kind of damage the AFE might have done to her other organs. Come - join our group and you will find many people to talk to about your friend!
As far as what causes AFE or how to prevent it, there really is no way. We had a database at our group where we compared many aspects of our births. The ONLY thing we all had in common was giving birth. It can happen in a miscarriage, in a C-section with no labour at all, in a “normal” labour, in a tumultous labour. There are many theories about what causes it but none that can explain every AFE. We can only push for drs. to be more aware of symptoms and nurses and doctors to be responsive to women who complain of or display early symptoms of AFE. They need to be prepared, even though it is rare.
I am 6 months pregnant and had no idea that this condition existed until yesterday…. Needless to say I am now terrified….
There is a young mother in Opelika, AL who is now in a comma after an AFE problem on May 1, 2006. She is alive and the young family needs your prayers…
May God Help her and her husband Trae!
I am sorry for what you all have been through. I am expecting my third child in September and am very concerned, I know very little about this and my Dr says not to worry. I have read this is more common with a male fetus and thats what I am expecting this time. I am curious to know those of you who survied and of those who have passed how many of you had boys? I saw one was a girl. Is this a allergic reaction or something that even someone with no allergies can get. Any information would be so helpful I am paranoid now. Thank for your help. My prayers are with you all .
I too am a survivor of AFE and DIC. It happened with my 2 child - a girl - during a normal delivery. I had seziures immediately following my water breaking at home, emergancy c-section and massive hemmorhaging which led to 26 blood transfusions. I was in ICU for 4 days, and in the hospital for only 7 days total with no lasting effects. 2 1/2 years later, I am now pregnant with my 3rd child - due in August. I am scared for delivery, am considered high risk, and will deliver by c-section at 38wks. My doctors don’t know why it happened, but tell me the reoccurance risk is extremely low. It’s nice to know there are some out there that have had uncomplicated subsequent pregnancies. God bless you all for having gone through what you have.
Kristin
I am very concerned about the possible connection between pitocin and AFE. What is the believed connection? I lost a friend this past week, it’s unknown exactly why at this point, but she was induced to deliver twins. The first was born and the second was breech. Apparently she died while pushing out the second. Until the autopsy is performed, I guess they won’t know for sure. The DR thought it may have been AFE, but said that the fact that she and her husband refused a blood transfusion is what actually killed her. Any information on the pitocin AFE connection would be greatly appreciated.
Wow. I had no idea there were so many of us. I had AFE during the birth of our first daughter, Gwendolyn, and wasn’t expected to live. I too, had an induced labor using pitocin and also Misoprostol, a cervical ripening gel- also called cytotec. Upon looking into this drug, which is not FDA approved for use in labor induction, I learned that one of the “side effects” is uterine rupture. I wonder how many others may have been administered Misoprostol. I am considering more children, but have much fear about my ability to bear more children. Best wishes to those of you who have survived this frightening ordeal, and to the families who’ve lost a loved one.
I am a child’s mother. I now am considering if I should get more children, but I fear I may suffer AFE.
I,too, am a recent AFE survivor and consider it a miracle from God (actually many miracles)that I am alive today. I am still recovering. I experienced an AFE while in labor with my 2nd child, a boy. I was also being induced & am strongly interested in what link pitocin may have had with this. I am in my mid-30s and was blessed that my doctor was present after my water was broken, as he recognized the symptoms and went into action immediately. He has been delivering babies for 20 years, and had only seen 1 other case 19 years ago, with a different outcome than mine.
After my water broke, I began to get nauseated and could not breathe. I had an emergency c-section (my baby is healthy)so that the doctors could work on saving me. I went into DICs, and had many transfusions. The doctors did not know if I would survive. I had emergency surgery again the same night to stop the bleeding. I was on a ventilator and feeding tube and was unconscious for several days. A week later, I was awake, and then crashed again. I ended up spending 6 weeks in CICU and 8 weeks total in the hospital. I developed ARDS (adult respiratory distress syndrome)and pneumonia; had heart issues; liver damage; kidney damage; and lost my gallbladder. I also had a tracheostomy to help me breathe and had part of a vein removed from my arm due to a blood clot. I was under sedation for all of these. I’ve been home 2 months now and am doing well for what I’ve been through. I also developed immobilization syndrome (muscle atrophy)due to laying in a hospital bed for so long. I have had to have physical therapy to address those issues. My husband kept a journal on the CaringBridge website to document my progress. If you are interested, you can go to www.caringbridge.org and enter my name, adacornwell to read the journal.
Audrey & Bailey - the fact that your friends survived the first phase and first day are good signs. I will pray for them.
All -
I feel like a survivor, each and every day. I experienced an AFE & DIC with my first son. He did not make it. To any who worry - I’m not going to tell you not to, I did with ALL of my next five sucessful deliveries. I never had pitocin except for after delivery. After having three girls following my sons passing without any problems, I was terrified to learn that I was pregnant with a second son. No problems with his delivery, and none with his baby sister. I’m pretty sure we are DONE :O) I think that this is an AWESOME place to hear from other women who share my experience. Even after almost 13 years, I’m still searching for answers. Recovery is long, and I will never recover from losing a child. Kudos to you all for reaching out to one another and networking. May God bless each and every family touched by this.
Dear ladies, I may be the only male posting in this group from Asia. My wife had just pulled through today a sudden drop into a fit-like stage 10 minutes into being put on a drip with the to-be-born baby’s pulse dropping from 158 to 70 within minutes, all these after 12 hours of slow labour progress.
Praise God, and that our doctor was just meters away and having the quick mind to keep eyes not just on the baby with dropping pulse but also the mother who was showing really abnormal signs.
Doctor suspected AFE and I have to concur having personally witnessed the symptoms listed above (and in AFE references) that suddenly appeared and the hospital staff pulling together doing the right thing with immediate emergency baby delivery, blood transfusions (with added blood clot factors), resuscitation and monitoring all vital signs to guard against dropping blood pressure, increased heart and breathing rates.
And of course, God! I thank God ‘cos our obstretician had discovered the hospital emergency specialists pulled to save her were all believers in God, and with our family and home church praying real hard.
I’m going back now to the ICU to keep vigil though she’d come round, her skin colour restored and she’s lucid to talk, and the baby’s in ICU on respirator but all vital signs stable: if both mother and child continues to mend for the next 8 hours, then we’re safe.
I wanna salute all mothers who love their children that God had blessed them so much to undertake conception, pregnancy and child birth in the face of all the risks modern medicine has observed and recorded.
And praise God, in the good times and the bad.
Under God’s infinite love, grace & mercy,
Blessed
Ladies, I too am a survivor and I would like to thank all of you for your stories. I get terrified to remember the moment I was diagnosed. My embolism happened after and emergency C section, due to abruptia placenta, my placenta was tearing and my baby’s heart rate was low. I developed the embolism and had multiple blood transfusions. I was put on oxygen for ? and had to learn how to walk again. 36 hours after the birth of my first child. I was declared grave condition and wouldn’t make it through the night. I was hospitalized for two weeks. I thank God every day for my life but I am left with the question of why. To all of the women who would like to know who has these embolisms…. I have never been overwight, I have never suffered from ANY allergies, I have never had any type of surgery except the C section, and I delivered a girl. I ask myself everyday why I am here and I have no answer. Since, I never had any problems and I survived something that usually no one does, I developed terrible anxiety. Since I survived the embolism, I think that something so little could take my life and I worry everyday when I get into my car or when I cross the street. I am currently on Zoloft for this. I am so thankful to have found this website and the only reason this is coming out after 14 months is my husband would like to have another baby and I am terrified. My OBGYN has practiced for 25 years and he can count on one hand how many times this has happened in those years. So what is next…… Do you take the one in some odd chance?
MY26YEAR OLD SWEET DAUGHTER PASSED AWAY DEC.05 WITH AMNIOTIC FLUID EMBOLISMS. BUT WE DO HAVE A WONDERFUL BABY GIRL THAT WAS DELIVERED. IT WAS THE MOST DEVISTATING THING TO EVER HAPPEN TO US. ALL OUR LIVES HAVE BEEN TURNED UPSIDE DOWN . AS HER MOTHER I JUST CANNOT SEEM TO BE ABLE TO DEAL WITH MY LOSS THERE JUST HAS TO BE A REASON FOR THIS KIND OF THING TO HAPPEN. I DO NEED HELP IN TRYING TO HEAL, LAURA
my mother died of an emblism 4 years ago. She deliverd a health baby boy. she was 41 and very healthy. she was joking around about how she couldnt breath very well and then turned blue. I read something about breaking the water and ruptuing something that may cause it… anyone ever hear that? Is it something that could have been caused by the hospital on accident? I know they tried to break her water a couple times and she called me to tell me they couldnt break it. Is that wierd?
My friend Steve passed along this group which helped him cope with all this:
http://ca.groups.yahoo.com/group/amnioticfluidembolism/
I am a AFE survivor 2/18/04. It was my 5th child’s birth and I do not remember it. I had a seizure, I needed CPR 2 times, 120 units of blood. Thankfully my baby was healthy. I am now a stroke survivor. I have short term memory problems, reading and language challenges but I am so thankful for being alive. My 5 children really needed me!
I am happy to find your blog. Thank you for adding this information on the web. It is limited. When I had my AFE all my friends and family searched for info on the web and the internet was very helpful.
My sister Binita 29 yrs old passed away on 12 Sep 2006 with AFE during her first pregnancy. She was so healthy without any problems through out her pregnancy period and its hard to believe even now that this terrible thing happened to her. Within a couple of hours our life changed 360 degrees. She had a unplanned c-section as doctors found her amniotic fluid to be low and they suspected the umbilical cord tied around the baby couple of times. On Sep 11, the baby was delivered without any problems. She came out of the OT wihout any problems, talked to everybody and even breast feed the baby. After 4-5 hours she had some cough and complained having chills and went into DIC. The doctors took her to the OT again and tried giving some blood products to control the bleeding and later shifted to ICU where she was declared dead. Its very difficult for us to believe the fact that such a young and healthy lady could die with something like this. Hard to believe…
Ladies, I too am a survivor and I would like to thank all of you for your stories. It was my first pregnancy and I had a little boy. I had a very normal pregnancy and my water broke at home early one morning. About 6 hours into labor, I was placed on Pitocin. After about 15 hours after my water broke, my doctor decided to deliver c-section. I remember everything including holding my son. Then everything seemed to slip away. I was in CCU in a comma for 8 days, the spend another week in the post birth area. It was a long road to recovery, but my son and I are perfectly heathly and neither of us have had any medical problems. I know god was on our side that day and he is who I thank for allowing me to watch my son grow up..
I am a survivor of AFE and DIC. After the birth of my son on June 28, 2006, I lost a lot of blood and was not expected to survive. I had arrived at the Hospital at 6AM to be induced with petocin. After I had a normal delivery I remembered my doctor telling me that I was bleeding more than he wanted to see. He continuously massaged my uterus and performed an episiotomy. It seemed like it was forever that I was laying there. The next thing I know, I began to loose a lot of blood. It was flowing like a water faucet at full speed. Shortly after, I began to lose my eyesight and Diarrhea poured out of me. It was flowing like a water faucet as well. Later, I was told that my body was shutting down for death. I had to have a blood transfusion. The blood was escaping my body as fast as it was going in. My doctor told my mother that there was nothing else that they could do for me. They decided to perform an emergency hysterectomy on me. The surgery was successful. I later learned that my uterus had ruptured in the process and they had to remove it. I woke up the next morning in the Intensive Care Unit with my hands strapped to each side of the bed. It was a miracle that I was able to breath on my own a few hours after I woke up. I had a bunch of IV’s in each arm and was on oxygen. My doctor and other staff did not expect me to survive through the night. They told me it wasn’t their work that it was all God’s work. Wow! What doctor would admit to that? It was the will of God that pulled me through this. My family and friends are still devastated over what has happened to me. There are many days that I still get depressed over it especially knowing that my scar will be a constant reminder. I am blessed to be here and blessed to have the opportunity to raise my beautiful, healthy son.
Also the rupture of the membranes was high, with closer access to placental veins, etc. I started with symptoms after my child was born but spent 6 hours in the delivery room, unconscious for about half that time. I got 7 to 8 pints of blood in the delivery room, some packed cells and some units of fibrinogen because the fibrinogen gets depleted in this syndrome.
My sister-in law just suffered an AFE on December 5th, 2006. She is now in a coma. She lost oxygen to her brain temporarily, needed an emergency hyst., had a transfusion, and an emergency C section.
Our question to those of you who went into a coma is how were your brain waves while you were in the coma? What were the doctors saying a few days after this happened to you? She has low brain waves right now, but when her husband talks to her the waves appear to improve. Any idea’s? Also, i have heard that when people are in comas they can often hear everyone in their room, did any of you experience this?
Any suggestions on how we can help would be greatly appreciated.
I lost a friend this past week, it’s unknown exactly why at this point, but she was induced to deliver twins. The first was born and the second was breech. Apparently she died while pushing out the second. Until the autopsy is performed, I guess they won’t know for sure. The DR thought it may have been AFE, but said that the fact that she and her husband refused a blood transfusion is what actually killed her.
I am an AFE Survivor–this December 28th will be 8 years. The AFE happened after a planned C-section. I went into cardiac arrest, was resuscitated after 45 minutes of CPR, but suffered DIC, ARDS and multi-organ failure. I was in a coma on a ventilator for nine weeks. To answer your question Jason S, yes, when you’re in a coma, you can hear people in the room. And often when people are in a coma, they have very vivid dreams, which sometimes incorporate what is really happening in the room. It is really difficult to explain this, but if you go to my website www.nwards.org (the organization I started for ARDS survivors), there are many stories posted from people who were in comas and the dreams they had. I was in the hospital for over five months–it was a very long haul, and I was on disability for five years after my battle with AFE and ARDS.
A friend of my son’s wife suffered AFE Dec 05, 2006 and is now in a rehab facility. Does anyone know what the outcome is with rehab? I’m not sure what to say to the husband, or how to help him - he is currently caring for his newborn son and a daughter at the same time. She was in a coma for a while, but is now somewhat alert. She does not know anyone, will she recover? This is all so new to us, and we’re not sure how this will play out. He wants to bring her home at some point, any suggestions?
I have been involved with 2 maternal deaths in my career as an RN in a women’s center. One occurred 7 years ago and the other occurred 2 days ago. The first was definitely AFE. She was 34 and went unconscious while delivering her 5th baby, a boy. She was not induced. She exibited her first symptoms just about 10 minuted before the birth. With this 2nd mom dying, she was on pitocin. I don’t see pitocin being a determining factor. She delivered a girl. It was also her 5th baby and she was 35 years old. There are not words to express how sad these events were. We in the women’s center are are still grieving from the one 7 years ago, and now are so saddened by the one this week. I will add that the medical response to both times was immediate and completely appropriate. I know that everything (and then some) was done to try to save their lives. My thought and prayers are with these families, especially those of this week’s tragedy.
I am a survivor of AFE. I was 25 years old when it happened with my first child. I had a fairly easy labor/delivery _ was not induced, I went home the 3rd day and 24 hours after my hospital release I was in ICU. They didn’t know what was happening to me. I couldn’t breathe. They thought I had a stroke. Finally they called the cardiologist and a pulminary specailist to the ER and they determined that I had AFE and I was very fortunate to be alive and my son to be alive as well. I had never heard of it, until it happened to me. It was one of the worst things I have ever experienced in my life. All I could think about was my new baby boy. I thank God every day for helping me pull through it and be able to see my little boy grow!!!
My niece Jennifer passed away in August of 2006. She died 11 days after the birth of her third daughter. We had orignially been told that she had pulmonary hypertension, but we just got the autopsy back and it said that the cause of death was amniotic fluid embolism. She was released from the hospital with a clean bill of health. A few days later she was having trouble breathing and she went to the hospital where she was admitted directly into ICU. She slipped in and out of consciousness and they tried to airlift her to a hospital in Boston. She died a few hours after she was transported. The pictures that we have of her in the hours after she gave birth show her happy and healthy. We were shocked at her sudden death. Hearing that there are many survivors of this trauma makes me wonder what happened in her case and where things went wrong. Her three beautiful girls are learning how to cope without their mother, and my family continues to mourn for the loss of our beautiful, gentle, fun, and kind Jennifer.
my bestfriend may have had this condition with her first child ( alot of her symtoms sound similar ) what are the chances of this happening again with her second child? does any one have any information? thank you
I am a survivor of DIC, but this is the first I have read that it could have been caused by AFE. I was given very little information while in the Hospital recovering from DIC. On Sept.30/1999, I delivered my 4th child (a boy) by planned C-Section. (I had three previous C-Sections; girl, boy, boy.) I did not feel good after the surgery; my blood pressure kept dropping when I was in an upright position, but I chalked it up to having a baby at the age of 35. I told my husband that I thought something was really wrong. Thirty hours after surgery everything started going crazy; I started bleeding heavily from the vaginal region (like a hose), and apparently from my eyes, ears, nose, mouth, heart, lungs, and other organs as well. I was rushed back to surgery where I was given medication to clot my blood, and heperin to thin my blood so I would’nt get any blood clots. I was given many units of blood, and finally my blood started to clot, and I was taken to the CCU, where I spent 2 days on respirator, and another 8 days in hospital recovering from what the doctor’s say is a miracle. I spent a full year recovering from this ordeal and have had ALOT of bladder/kidney infections (about 12) since. I also just wanted to mention that my daughter from my first pregnancy actually died from pulmonary hypertension at the age of 19 months. I was in labor for 36 hours, 24 of which my water was broke and now I wonder if my daughter somehow asperated on some of the amniotic fluid, which could have caused the pulmonary hypertension. If anyone has any thoughts on this, I would like to hear from you, as I have very little information about this disease.
I am a perinatologist and epidemiologist, earlier a Director of Women’s Health at WHO, with a great interest in AFE. A recent excellent scientific report (The Lancet 368:1444-48, Oct 21, 2006)proves the risk of AFE is greatly increased by pharmacological induction of labor. Labor induction is greatly increasing in the U.S. and women need to be warned of this risk (they rarely are warned). Please alert all your friends to refuse induction if offerred. If you have questions, send me an E mail.
My name is Peter McLean and my wife Penelope, suffered AFE just over two weeks ago (March 25, 2007), during the birth of our second child (a daughter, Calypso). We had never heard of it and the speed of onset, must be seen to be believed. I was just talking to her and she said she was going to vomit and died so quickly she did not even have time to close her eyes. They worked on Pen for about 25 minutes before she arced up again. She was in ICU section of the hospital in Mackay (Qld) for a week, during which time she was on a machine to breathe for her and she too had many many packets of blood. This period was a living nightmare. In due course Pen came off the machine and about a week ago went into the wards. I have been advised Pen has some brain damage but they are uncertian if it is temporary or permanent. At this stage she remembers many of her family and friends but whilstt taking clearly she speaks on for the lack of a better word inappropriate topics to the conversation. Currently Pen has periods of lucidity and we are hoping to take her for more nuerological rehabilitation in Brisbane. I read with interest some of the stories however Pen was not induced, quite the oposite, they kept saying it was just strong Braxton Hicks contractions. ASs for the chemicals to my knowledge Pen did not have them and so possibly these chemicals made not be causing some any? of the cases of AFE. What is evident however is that many doctors and midwives have never heard of AFE and that I think is a tradgedy, we were lucky in that that one of the doctors immediately recognised the BLACK WATER, apparently this is a clear sign of this condition. I would ask those of you who have written in to advise of what you know of the nuerological effects of this condition. Whilst obviously every case is different I love my wife dearly and hoping desperatley that we can overcome the effects this has had on her brain and enjoy the new addidition to our little family.
I am from Melbourne and am myself a Registered Nurse. I survived AFE, DIC, Sepsis and a grossly enlarged vulval heamatoma on the 17th Dec 1996. I had a healthy pregnancy with nil complications apart from ongoing 24hrs ‘morning’ sickness. My membranes ruptured sponatneously on the 16th Dec whilst visiting my mother for her birthday. I was admitted to the birthing unit that evening and had no signs of contractions overnight. I was induced the following day and was administered Synto. During my first synto-induced contraction I had meconium run down my legs, a sure sign of foetal distress. I eventually, against my wishes, had an epiosiotomy and the use of forceps to turn my baby. During this event I felt and heard a pop right under my umbilical region. Moments after delivery I began to bleed eventuating in DIC. I lost a total of 1 litre of blood that they could see. I kept heamorrhaging but the doctors did not know where the rest of the blood was going. They thought that they had stabilised my bleeding and left me. Again, moments later I complained about chest pains and difficulty breathing. The scary thing, being a nurse, is that I knew what was happening. I knew that I was dying. I went into respiratory distress and a code was eventually called. They resuscitated me and despite losing consciousness, I fought hard. I was damned if I was going to die and leave my husband and new baby girl all alone. I ended up in ICU and luckily breathing unaided. My OB/GYN prepared my family and told them not to expect me to survive the night. He kept a bedside vigil all night. I wonder how many doctors do this for their patients? They said if I did survive that I may have severe brain damage due to my hypoxia. I went blue on the face and was not breathing and getting sufficient oxygen for approx 10mins. It’s a wonder I am still here today. Over 24 hours after this initial incident and after all the blood and blood products pumped into me, the real horror started. The ‘rest’ of the bleeding had pooled in my perineum resulting in a horrendous vulval haematoma the size of a volley ball. It truly horrified and disgusted anyone who saw it. The doctors did not know what to do for fear of triggering DIC again, they dared not touch it. It took a long time and the help of physiotherapists to break down this haemotoma. I had to learn how to walk again. For weeks I endured a pain I wouldn’t wish on my worst enemy. It (haemotoma) collapsed all my internal muscles and caused some life long disfigurement. I went on to have two boys, depsite looking after myself. (God’s wish for me to have them) Unfortunately, due to the extensive damage I eventually had to have the hysterectomy that they wanted to perform at the time, but dared not to do. I have had to have multiple surgeries to continue to correct this event and am currently recovering from surgery again (1 week ago)in relation to what happened to me over 11 years ago. I still believe it was the use of the forceps which caused mine and can still hear and feel the popping sound that started it all. I spent my first Christmas and New Year’s with my baby in the hospital and against their wishes I begged to be discharged. I still have pain and discomfort below and know that I always will. My daughter always asks me if I would go through all that again if I could travel back in time. I look into her twinkling eyes and always respond…..absolutely!!
Hi everyone,
I’m a suvivor of AFE since August,2004. I didn’t know anything that time until my husband told me later, after 3 weeks. Now, I want to pregent again. Are there anybody that would give me any suggestion? Should I pregent again or not.
Thank you.
I am now 57 and also had AFE when my last son was born. I was 33 and has a son. I heard it was more often with older women and ones having a male chil.
I hd been on bedrest for the last few weeks because of high BP and I was in labor all week. I started with light contractions on Monday and was admitted to the hospital on Tuesday and pitosin was started as the contractions were registering on the machine but never hurt.
No delivery that day so I was put in a room for overnight stay and back to the labor room the next day. They restarted the pitosin and about 5PM there was no baby so they sent me home. This was Wednesday.
On Thursday night, my water broke so I returned to the hospital and was started back on pitosin to hurry the contractions. I layed there all night and still the contractions weere not hard enough to have the baby.
Friday night my baby’s heart rate dropped and they decided to do a c-section. On the way to surgery, I felt a sharp pain in my abdomen and screamed. I was in such pain that I was begging for something.
I was later told that a blood vessel in my womb burst and the amniotic fluid went threw my blood stream. My son had to be resuscitated and my hear tried to stop and my lungs collapsed the next day. And then I started hemoraging really bad and had to have another surgery a week later.
I am lucky ehough to say that it was a little over 24 yrs ago and my son will be 25 in July. He was born on July 13 on a Friday with a full moon.
I forgot to ask a question.
Did any one that went thru AFE, have trouble with Pulmonary Hypertention later on?
I went to the hospital on September 11, 2008 one day away from my sons due date. I am almost 38. He wasn’t moving around as much as they would have liked during the stress test. I was told he was a big baby (9lbs.2)and that I should consider a c-section. I really wanted to have him without a c-section. I had two previous births at 34 and 36(girls) vaginal births. I was induced with the first and with the second it was on its own. I was given a cervical ripener that day and then followed by pitocin 12 or so hours later. Around 9am on September 12 I remember the nurse upping the amount of pitocin I was receiving to try to get the contractions closer together. My husband went to the bathroom and the nurse was in the hall. I was laying on my side and the next thing I heard was a pop in my belly. A minute later I felt what I thought was amniotic fluid coming out of my vagina. My husband came back in the room and so did the nurse. I told them I think my water just broke and the nurse said my doctor was on her way to break it for me. The anesthesiologist came in the room and started explaining pain medicine options and then I remeber having trouble breathing. It kept getting worse and the nurse had me move around to change positions. After a minute or two more I could not breathe and I was being wheeled out of my room. I woke up the next day (which at the time I did not know was the next day) in ICU with a tube in my throat. After about an hour of being awake my husband had the daunting task of telling me what happened. I love that man so much. He knew to give me the news in small increments. He said after I was wheeled out of the room he heard code blue and a pastor came in the room to talk to him. About what he thought was an hour later he got to see our beautiful baby boy still not knowing what was happening to me. They explained to him that I needed blood transfusions and they were trying to prevent any more blood loss. Four hours later they came to let him know they had to perform an emergency hysterectomy to stop the bleeding. I come to find out later my heart stopped for thirty seconds and when they took out my son via c-section his heart rate was so low they were not certain he was breathing. All this said we both made it through and I got to see my son for about a minute that day ( his newborn skin was so soft) before they took him to Childrens hospital. I had to stay in the hospital for 5 days and he was in for 6. It was tough not being able to see him but I knew if he needed anything Childrens is where he should be. Also I was recovering from my own ordeal. The first day I could barely walk but by the time I was being dischardged I was walking on my own for short bursts but still very lucky. Every doctor I talked to during that time kept saying it was a miracle. Our outcomes were a miracle. My son is now 4 months old and seems to be progressing normally. He just started razzing and he holds my finger, babbles, and does all the things a four month old should. I believe we are so fortunate to have had the doctors, nurses, and whatever angel on our side. I love my family so much and I’m so happy to be with them.
My son and I survied an AFE in August 2008. I had an easy pregnancy with no adverse effects. My water broke at home at 4 am, we went to the hospital at 7 was addmitted quickly and given an epidural. I was given pitocin to speed up the contractions after the epi. My nurse told me that it was time to get ready, so I sat up in the bed and pulled my hair back into a ponytail. When I laid back down, I had excrusiating chest pain, then immediately head pains, then started seizures. I don’t remember much after that, except being wheeled in for the Emergency C-Section, I started vomiting. My son born 1 and a half minutes later. He was taken out for observation where he aspirated, but recovered with not other problems. I was kept on oxygen after the delivery, but recovered quickly. My son and I went home 3 days after delivery. The only lasting effect was my incision from the C-Section would collect pockets of blood (because, as we found out, my blood didn’t clot) and they would spontaniously errupt. That was scary the first time, let me tell you….I went to the Dr’s office where they drained the pockets. I had to keep maxi pads taped to my incision site for about a week after to soak up any other erruptions/seepage, but after about a week, that too stoped.
I do have a lingering since of dread ever since the ordeal. Why did it happen? What could I have done differently? Why was it mild compaired to others? Why did we even survive at all? Can I have more children, what if it happens again? Can I risk that at the possible expense of my current family?
Hearing your husband and mother begging the dorctors/nurses to save me and not the baby, when inside I’m screaming that I just want the baby to be okay…I haven’t quite come to terms with that yet.
It’s been a blessing to find a board that has documented experiences from other survivors. I am still haunted by the what if’s and why’s.
If anyone has any resources on any long term health effects, I would be interested.
I am 30 yrs old and still reocvering . I am a survivour of AFE which happened on the 14 th of Jan 2009 . I had a sudden esporatory attach with in 20 min of the membrain being ruptured . Although the doc say there is no reason for it .but i personally feel it is related to the membrain that was ruptured .I lost my little baby girl .I am still trying to recover physically and emotionally from it . I was rushed to the OT where the DOC tried to save my utreus and my life which they apparently lost for 11 secbut managed to revive . The loss of my lil one and the fact that i would not be able to concieve again is very painful ..I am trying to pick up pieces of life to move on …and hope my lil butterful who flew away is safe and at piece where ever she is
I as well am I survivor of AFE.
I was in the hospital for a week after having my daughter, going through test after test, being moved to a different floor then her and they had no idea what was wrong with me for the first 4 days after I had her. It was the most miserable time of my life. I was in labor for 31hrs before they decided to give me a c-section. Then I had a tube from my nose into my stomach since I wasn’t releasing gases. Then they kept thinking I had blood clots, they told me it was one large clot then 20mins later they said it was a few small clots. It took them 2 days after finding the first clot to find out what was going on. They weren’t sure if I was going to make it. I was on so many drugs and so depressed from being moved from the floor my daughter was on I was truly emotionless and depressed. It was the worse first time experience for giving birth, but I still want more kids. I’m just really scared.
Why did this happen to me? The hospital I was at has only came across this once in the last 30yrs and that woman died. They said it’s a miracle I’m alive. I enjoy life a lot more now and have a beautiful and healthy little girl. Her father, my other half, says he has a different respect for me and loves me more in a way. He couldn’t think of not having me around, or trying to be a first time father at the age of 21 all alone.
I am 41 and have a baby due on July 15th 09 c-section scheduled due to the fact in 1993 my son was born after 18 hrs labor, induced, and then emergancy C-Section. I too, am an AFE survivor. I had my son at Queen Elizabeth Teaching Hospital in Brimingham England. I am grateful to be alive.
My OBGYN here in America have never had to experience AFE and I am so scared. There is NO documentation on someone who is a survior and not suffering from AFE/having no complications from AFE for the next deliveries.
I was 40 when my twins were born via planned cesarian due to them both being breech. Two hours after delivery my body shut down. A code blue was sounded. Cardiologist, trauma center docs, OBGYNs, etc all came running. CPR was performed. I was in AFE and DIC. I had an emergency hysterectomy. A 60 units of blood and clotting product transfusion was done through 5 ports made in my chest. I was intubated in the ICU for 2 days, my abdomen was packed with absorbant material, and I was left overnight with lots of prayers. The bleeding stopped and I somehow survived. I was in the hospital for 10 days as the rest of the blood transfused into me was removed through a constant vaginal suction mechanism. Of interest, my unbelievable doctor told me I probably couldn’t breastfeed because my pituitary would have been effected and my body wouldn’t even remember I was pregnant. My husband knew how important it was to me so while in ICU he had a lactation specialist come in and start pumping me! I used donor breast milk for 8 weeks until I fully produced enough milk to feed my twins, which lasted until about 15 months. I didn’t think I had any residual effects but now something is in question. Due to thyroid issues, and new test results showing my adrenal and growth hormones are low, there is question as to whether I had damage to my pituitary, perhaps from Sheehan’s Syndrome. I am having a pituitary MRI soon to find out. My moods, memory, focus, organization, etc. have been off for several months, completely out of the blue. SO it will be interesting to hear the results of the MRI.
My twin girls are about to turn four. They have no concept of what I went through to have them…seven rounds of in vitro fertilization followed by the AFE and DIC. I count my blessings daily!
I too survived an AFE. I would really like to hear from anyone else in Australia, as we try and set up a support network for those who have been affected by AFE.
Please feel free to contact me @ bron3630@hotmail.com
Bronwyn.
Two years ago, I delivered our third child, a healthy, beautiful girl. I was also induced that afternoon. As I was pushing I began to vomit. Now I look back and think that was probably the first indication something was wrong. I began bleeding severely. My doctor was trying different things to get it to stop, but nothing was working. I looked at my husband and told him I felt like I was dying. The doctors immediatly rushed me to ICU. I was there several days and the bleeding wouldn’t stop. They gave me 17 units of blood, plus platelets and plasma. The doctors then decided to perform a D&C. They talked about having to do a hysterectomy in order to save my life. When they took me in to perform the surgery, the bleeding stopped. The doctors said that I had an Amniotic Fluid Embolism and that I went into DIC. It was a total miracle from God that the bleeding stopped. The doctors told me that my kidneys had failed and they thought I would have to have dialysis. The sent me to a bigger hospital in the city for this. Once again, God was watching over me and answering prayers. My creatine level finally came down to normal. I was in the hospital for seven days. I was anemic and also had some really high blood pressure for a few weeks after. Thankfully, I have fully recovered from this. I thank God and the wonderful doctors for allowing me to pull through and raise my children.
My 35 year old wife is going through AFE now 11/6/09. She experienced the same effects as the other women. As of today, her ninth day, she has received 42 units of blood and blood products. She has not regained conciosness as of yet.She has been on respirator and dialaysis.Baby had to be respirated and was in NICU for four days, he is home now and thriving.We are playing the waiting game with mom.Acatscan showed she had two strokes in the optic part of her brain.We are living minute by minute, She has a four year old daughter at home that misses mommy.Moms name is Regina Hart, a nursing student herself,please keep her in your prayers and prayer list.
Casey ( husband )
11/8/09
Regina opened her eyes last night and follows movement,her kidneys are working enough not to have dialysis today ,she is breathing on her own and respirator may come off tomarrow.The nurse asked her to hold up two fingers and she did, her blood count is ranging from 8.5 to 10 so she is requiring less blood products,Ibelieve she only received one unit of blood yesterday.Thank you for prayer
Casey
I am a survivor of AFE mine was 9/5/98 I remember being in the delivery suite having my daughter, remember telling the midwife and my husband that something was wrong I din’t feel right, aparently I then has a siezure. My baby was still inside and i was crowning. The midwives had an idea what it was but they had never seen it before. I was lucky that the Dr walked onto the delivery suite at that time the emergency alarm went off, as it was his day off and he had read up on the subject a few weeks before. I remember coming round at one point, I could feel the blood gushing out but nothing I could do. I eventually came round again in the icu with a tube down my throat 9 lines in my neck pumping bloods, platlets and other fluids into me as fast as they could get hold of it. I was told my heart stopped, my lungs collapsed, kidney and liver failing. My family were told to prepare for the worst as the chances of me pulling through were slim to none.
To this day I have trouble remembering my daughters birthday as she was days old when i finally saw her.
What I would like to know from other survivors, do you have any long term after efects. The only thing i was told was that i might suffer headaches in the future and i do along with patchy memory, dizzy spells, depression to name a few. I just wondered if anyone has other symptoms in the long term.
Sharron