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I recently had a baby and experienced a rare amniotic fluid embolism. I was in labor and had to have an emergency c-section for other reasons. During surgery I began to bleed profusely and was sent to ICU to receive blood and be monitored. The drs think it was AFE which caused this. Baby and I are fine now but we both went through alot. Has anyone experienced this? I am also trying to find info on whether a second pregnancy after AFE is safe. I want more children but am terrified of this happening again. I realize how lucky we are to be alive.

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Hi there! I am glad to hear that your pregnancy, despite all its complications, did go well ultimately. I am glad that you and the baby are doing fine. I can tell you that if you did have the embolism once that you are more likely to have one again only because of it. I think that you should consult with a physician about the appropriate steps to take if you are looking to conceive again. Please keep us posted on what they say, okay?
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Thank you for your quick response. I kind of figured that having it once might make someone more likely to have it again. I just like to hear other people's opinions. I did ask my OB while I was in ICU would I ever be able to have more children (but this was kind of still in the stages of not knowing exactly what happened). She said if I did she would recommend doing a c-section at 38 weeks and not let me go into labor on my own. I was induced this past time and I really have a feeling that's what caused the embolism, and they sort of guessed that it occurred right as I was starting to push, but we will never know. There is so little info out there on AFE because most people die from it, so there's even less on successful subsequent pregnancies. I am interested to hear anyone's stories or advice on this topic. Again, thanks for your reply.
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I also experienced an AFE (Amniotic Fluid Embolism) and was fortunate to survive with very few after effects. Actually, drs. who have studied AFE say it is NOT likely to happen in subsequent pregnancies. However, being overly cautious and treating it as a high risk pregnancy anyway is common practice.
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Hi there,

I am also a survivor of AFE. I am so glad that you are okay.

Another survivor has started a foundation focused on researching AFE with the hopes of finding a better understanding of the causes of AFE. The foundation will also help support those who have been affected by AFE. We are currently building a database of AFE survivors.

I would love to share more information with you about the foundation and tell you about a research study that will soon be underway that will focus on AFE survivors.

Please contact me at for more information about the AFE Foundation. I would love to chat with you about your experience with AFE. Also, if you are interested, I can help see if there are any other AFE survivors in your area. I have recently met a few survivors and it has been an incredible experience. We are a rare and special group!

Many thanks,
Amy

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Hi. I'm also a survivor of AFE, struggling with the question of whether or not to have another child. I'm being told that the risk of recurrence is right around 10%. Which is high, when you realize your life is at stake. Sigh.

Amy, I would love more information about the AFE foundation for research, and the AFE survivor database you mentioned.

Thanks so much.

Shana
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Hi, I also had afe. It was in October 06 with my fourth child. I really don't want to be the bearer of bad news, but I had to have a c-section due to a grade 4 placent previa, and it happened just after delivery. Thank God we are fine, but it was touch and go for me. Luckily my daughter had been delivered before it happened. All I would say, is not to assume it will be ok with a planned c-section. I belong to the facebook afe sites and they are a huge comfort. I also know that on there are a number of women who had successfully gone on to have other children. Good luck!

Melanie
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Hi Shana,

I would love to share more information with you. It looks like I can't post my e-mail address here (it was removed from my original post-oops!) but you can contact me via the AFE Foundation website at . It is a work in progress but the home page is up. There is a place at the bottom to send an e-mail. The e-mail will go to Miranda who is the survivor that started the Foundation. She can either respond or forward your message to me and we can go from there.

I am so glad you are okay. We know of several survivors go on to have uncomplicated second pregnancies. This is one of the reasons keeping a survivor database is so important-we are able to track things like this. I have never heard of the 10% chance of that recurrence.

We also have a group on Facebook. The group name is Amniotic Fluid Embolism (AFE) Foundation if you belong to Facebook then you can find us that way too.

I look forward to hearing from you and any other AFE survivors out there.

Take care,
Amy
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Hi, first of, I'm glad you and your baby made it out ok.

I had a AE in 96.
I had a grand mal seizure, was cyanozed, thrombocytopenic and had a cardiac arrest during it all.

I'm pregnant again now, hence why I'm also checking these sites. There is about a 10% higher risk of recurrence. My Dr has alerted the maternity hospital and they have a specialist team that will take care of me.

They'll probably just want to monitor you, as you're now what is considered 'high risk'. But better safe than sorry they say.

As for your C/S bringing it on, its more like the labour that actually did it. Although there are some Dr's who advocate C/S in case of AE.

Anyhow, hope this helped:)
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Hello, I am also a AFE survivor. My baby was born Jan 15 2010, (but was due April 17, 2010) I am lucky and have no after effects. I was put on bedrest at 26 weeks and 5 days in the hospital, and the next morning my son decided to come into this world. My placenta was ripping away from my uterus, I was instantly fully dilated and having full blown contractions. They rushed me down to have an emergency c-section. I was completely under during the c-section. When I was still opened up on the table, I crashed. I woke up on a ventilator and was able to breathe on my own a few hours later and was able to leave ICU that afternoon. I didn't even realized what had happened until the nurse told me the next day. My baby was only 2 lbs, he is still in the hospital, but is improving. He is almost 7 lbs now. I too have always wanted more than one child, but don't want to risk my life to get it. My doctor said she isn't sure the chances of having one again because most women don't survive. I would be interested in hearing anyone with confirmed data on the chances of this happening again. I consider it a miracle that my baby and I survived, which we wouldn't have if I hadn't been put in the hospital for bedrest the day before. I've been told my many people that someone was looking out for us.
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Hi

I am also a survivor of an AFE and I would also like more information and / or research on this. I am now pregnant again and my husband are I are being really positive but and would like to take the necessary precautions to avoid a recurrence. Please let me know how I can access more information.

Regards
Claudette



aidensmommy wrote:

Hi there,

I am also a survivor of AFE. I am so glad that you are okay.

Another survivor has started a foundation focused on researching AFE with the hopes of finding a better understanding of the causes of AFE. The foundation will also help support those who have been affected by AFE. We are currently building a database of AFE survivors.

I would love to share more information with you about the foundation and tell you about a research study that will soon be underway that will focus on AFE survivors.

Please contact me at for more information about the AFE Foundation. I would love to chat with you about your experience with AFE. Also, if you are interested, I can help see if there are any other AFE survivors in your area. I have recently met a few survivors and it has been an incredible experience. We are a rare and special group!

Many thanks,
Amy

***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use

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dbo0601 wrote:

I recently had a baby and experienced a rare amniotic fluid embolism. I was in labor and had to have an emergency c-section for other reasons. During surgery I began to bleed profusely and was sent to ICU to receive blood and be monitored. The drs think it was AFE which caused this. Baby and I are fine now but we both went through alot. Has anyone experienced this? I am also trying to find info on whether a second pregnancy after AFE is safe. I want more children but am terrified of this happening again. I realize how lucky we are to be alive.

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Not sure if ne will see this but I just survivrd afe,I had twins and after my little boy was born,I started 2 get very ill and couldn't breath,I was r ushed for a section but my little girls oxegyn had been cut off and she had died b4 the section,I would love any info on going on to have future babies? I still ave panic attacks from the feeling of not be able to breath, thanks
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i also miraculously survivd from an AFE on 13/2/11. 11weeks today and ikeep having horrific flashbacks, panic attcks.still feel very weak.my baby gi/rl just made it after 2 weeks in NICU.I was in ICU for 5 days. im still struggling tocmeto terms with what happened and thik i have Post TRaumatic stress.is there any where i can get help/

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I had an Amniotic fluid embolus (AFE) with disseminated intravascular hemmorrhage in 1980 during the birth of my third,and final child. We both survived, and without any neurological damage which is pretty rare. I needed 14 units of blood and blood products.There is a facebook page for AFE survivors, their families, and for the familes who have lost a loved one due to AFE. New members have to be added by current members, so I'd be happy to add anyone, just email me at puubatcomcastdotnet.

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