Many friends and family have mentioned to me about the mom who coded for 45 minutes after having what appears to be an AFE.
ANOTHER MOM. ANOTHER AFE. ANOTHER MIRACLE.
Ruby Graupera-Cassimiro is lucky. She most likely will tell you that. She is lucky to be able to be with her family, to be the mom she was anticipating to be, and to be healthy. I feel the same way. It is all too close a call. There are women who haven’t survived as well as we have. There are women who have lost their children as a result of this deadly condition. There are women who lose their marriages because the husbands can’t handle everything that comes with surviving it. Mostly, though, there are women who do not survive, leaving families gutted and children without their mothers.
All the media attention Ruby is receiving right now does amazing things for our cause. It educates the audience to this rare and deadly illness. It shows that one has to put up a hell of a fight in order to survive. And it shows there still is a lot to be done about AFE’s.
The AFE Foundation is the number 1 resource on most of these news articles. They have the latest information on the statistics, the diagnostics and the research into this deadly condition. Even your own doctor will not likely have the most up to date information, if only because it is such a rare event that most doctors will never have seen one in their entire career. They don’t need to have all of the information at their fingertips.
Miranda Klassen founded the AFE Foundation after having her own AFE 6 years ago. She has been instrumental in giving suffering families resources. She been the point person to help families in need, and she is the one they call when they need answers. And now, with the advent of social media, the Amniotic Fluid Embolism discussion group on Facebook has amassed hundreds of survivors and families of loved ones who lost their lives. We now have peer-to-peer support on topics you can’t even imagine you would ever discuss after experiencing an AFE. For instance, one woman was diagnosed with Sheehan syndrome, (a condition that can occur in a woman who bleeds severely during childbirth. Sheehan syndrome is a type of hypopituitarism). She was diagnosed 10 years AFTER her AFE. That put all of us on notice to go get tested. And it is another reality we will have the possibility of dealing with after surviving. But we would never have that information or this group unless the media did what they are doing with Ruby’s story today.
Miranda’s work and all of the families affected by AFE need to talk about their experiences. I know it is difficult. In many ways, families want to move past this and get back to normal life. But like it or not, life will never be the same. To survive is a responsibility to the families who were not as fortunate. We cannot ignore that women are losing their lives each and every week to this violent disorder. Dr. Julie Levitt, my OBGYN, has yet to have another AFE patient, thank goodness, but that doesn’t mean she is not prepared for the worst case scenario if it happens. And given the statistics, it might happen.
I have made it my life’s mission to work with people who suffer from pregnancy complications, to support moms in need and to educate every day that G-d allows me to breathe.
I spoke with my anesthesiologist, Dr. Nicole Higgins, today regarding Ruby’s miraculous recovery and she reminded me of how precious those seconds are that make a difference between life and death. Here is a link to some of the work we are doing with the American Society of Anesthesiologists. During an operation, they are who hold your life in their hands.
Supporting this cause can help families remain intact and make the moment of delivery a memorable, happy one.
If you are an AFE mom, please share your stories here and on the AFE Facebook forum. Please have the courage to speak up because many others will never have a chance to raise their voices again. Please post pictures, tell people how harrowing your story was and why more needs to be done. Post your AFE baby and tell us how they are hitting benchmarks, growing, learning and how the AFE experience has changed your life.