Saturday, 24 May 2014

Stephanie's Story with Placenta previa, accreta and AFE

After 7 rounds of intense and emotional IVF procedures, Stephanie Arnold became pregnant with her second child in October of 2012. Beginning after her first ultrasound in the 20th week, Stephanie became overwhelmed with premonitions of her own death. She best explains this feeling as something that made every cell in her body feel like a ticking time bomb. She had no idea that what she was   feeling would actually come true.

Her daughter Adina was born 2 1/2 years earlier and delivered by C-Section, so she knew all too well exactly what to expect during the upcoming birth. Due to a placenta previa diagnosis and other factors that complicated her pregnancy, she knew that she needed to plan for the worst. However, it was the premonitions of doom that made planning a high priority. Rather than accepting bystander status, her husband Jonathan was able to step into the forefront as a key player to help her. As an economist, Jonathan realized he needed to set his analytical nature aside and focus on Stephanie’s worries. He knew that trusting Stephanie’s intuition as she cried out for someone to listen to her fears and premonitions was critical.

However, in everyone’s defense, there were no tests or medical books that could have been referenced to predict what was about to happen. All Stephanie had were the premonitions that had consumed her entire life. Though, the one difference between previous premonitions and what she experienced this time around was an overwhelming sense of foreboding. It was different from the traditional worries everyone experiences from time to time. The feeling that she would die, including visions of her own death, penetrated her daily existence and motivated her to get anyone and everyone to listen.

As her delivery neared, she was fortunate enough to have one or two people listen to her due to her persistence. She posted messages on Facebook and even sent goodbye letters. Her feelings were real so her mission became spreading the message, “If you SENSE something, SAY something”. And, if no one listens, you say it again, and again and again! She told everyone that she came into contact with about her premonitions. She hoped that someone, anyone, would relate to her and give her advice on how to proceed. But, ultimately, it was left to Stephanie to speak up and avoid sweeping her feelings under the carpet. Her husband Jonathan was her strongest ally, supporting her through every appointment and every visit, even if as Stephanie says, “he thought I was crazy.”  It was the love of her husband, family and friends and all of their support that helped her to become even more boisterous. After all, she was not ready to leave him permanently or leave her children motherless.  

During her pregnancy, Stephanie surrounded herself with the best medical professionals and those familiar with what she was going through. All were convinced and conveyed to her that what she was afraid of would not happen, and that the probability of it happening was slim to none.  Fortunately, she refused to settle for that and persisted on. Stephanie assumed people thought she was just hormonal and presumed doctors thought she was an annoying patient, but it couldn't have been farther from the truth.  Later, she learned that doctors do take premonitions and fear incredibly seriously. Unfortunately, many patients don’t speak up, so their doctors never know about their concerns. “They can't read your mind or your spirit. You know them much better than they ever could and you know yourself and your needs even better,” says Arnold.

Her own gynecologist, the same doctor that delivered her daughter Adina, never made her feel like she was crazy.  She understood Stephanie’s fears, but had nothing tangible to work with regarding her feelings. She supported Stephanie by giving her access to more medical professionals to speak with. When she opted to go see a gynecology/oncology specialist, her doctor thought it would be a good idea and was supportive. At 32 weeks she had an MRI which at that point showed no accreta had formed at that point, and when she asked her doctor how likely would it be to have an accreta form by the 37th week-- she said, she had never seen it before.  Thinking back, Stephanie believes that her doctor did not believe what happened to have been possible.

On May30, 2013 Stephanie was 36 weeks and at home when she suddenly started to hemorrhage. Her husband Jonathan went into survival mode and rushed her to the hospital for an emergency C-Section. In the middle of delivering their son Jacob, she coded – flat-lined with all electrical signs of life gone! Stephanie was clinically dead for 37 seconds and was kept on life support in a protective coma for 6 days until she stabilized. Her body was riddled with tubes, ports, and monitoring equipment and she had to undergo dialysis to rid her body of the edema. However, they saved her life and brought her back. Today, Stephanie and Jacob suffer no permanent damage, making them a true medical miracle.

Her ob-gyn, Dr. Julie Levitt, and the anesthesiologist diagnosed her with placenta accreta and an amniotic fluid embolism (AFE) - a condition where the amniotic fluid enters the mother’s bloodstream, triggering anaphylactic shock, respiratory failure, cardiac arrest and death. This occurs when the mother happens to be allergic to the amniotic cells. However, the condition is very rare, occurring in roughly 1 in 15,200 pregnancies. In fact, AFE is so rare that Stephanie’s case was the first in the history of their practice. And, while incidences are low, the condition is the second leading cause of maternal death in the United States and the United Kingdom.

At 36 weeks she delivered. The amniotic fluid embolism (AFE) happened and they thought they had the bleed under control when she was put into SICU. 7 hours later, they realized she was bleeding through the uterus. Gyn/onc was called in and performed hysterectomy. The pathology showed an accreta starting to form, which is how the amniotic cells got into the bloodstream causing the AFE. Not visible to the naked eye, because when placenta was delivered, it looked complete.

Coming on in two phases, AFE is extremely catastrophic. In Phase 1, the patient goes into cardiac arrest, the lungs shut down and the body goes into complete shock. Roughly 40% of patients do not make it through this phase, however, Stephanie coded here and lived to tell the tale. Those lucky enough to make it past Phase 1, then have another uphill battle to fight. The AFE stops the blood’s clotting capability, so many patients hemorrhage to death. Due to these factors, it’s currently believed that as many as 85% of AFE patients do not make it out of the operating room. Stephanie credits her survival to her foresight and the conversations she had with her anesthesiologist leading up to Jacob’s birth. She requested that they change her anesthesia order to include more blood, a crash cart and more monitors. “That is 100 percent what saved my life,” says Arnold.

Stephaine needed 60 units of blood and blood products which is classes as a massive blood transfusion.

After clinically dying and coming back, Stephanie has been given a second chance and wants to make every moment count.  She says she has good days and bad days - many times feeling survivors guilt and wondering why she was chosen to live. Because of this, she makes sure she is totally present in every second of her life. She values every interaction she has with others because she believes any day above ground is a good day and she is more empathetic than ever.

She often reflects back to being in the ICU, obese with fluid from edema, and recovering from a tragic AFE. The inability to hold her newborn, let alone spend time with her daughter or her stepdaughter because she was not coherent is something she will never forget. She has learned that her family is the most important thing to her and that her husband will always be there for her. His love and his support got her through every single day. According to Stephanie, “I was on low voltage with my intuition because people would look at me like I was a freak if I talked about things I saw. After losing all electricity in my body, I am now on high voltage or supercharged and won't allow anyone to make me feel like a freak when I sense something. Remember, ‘If you SENSE something, SAY something’.” If it will save a life, it only makes sense to speak up – she knows because it saved hers.

According to Stephanie, “They say it takes a village and in my case, it did”. Neighbors were there for her and her family. The Jewish community came together and prayed while other communities also joined in.  One doctor said she couldn't give her a medical reason why she survived, so she needed to “go spiritual on this one.”  And, she was right as her family leaned heavily on the prayers of the community and its spiritual leaders.

In her "previous" life, Stephanie worked for Lubavitch, as a successful television producer she produced Jewish educational documentaries, including one about the Rebbe Menachem Schneerson (SP).  She is also known for covering the story rather than being the news, Stephanie’s multi-talented 27 year television career generated her Emmy Nominations and a Telly-Award as she directed and produced numerous television series, reality shows, music videos and documentaries. In her private life she has been a member of Chabad for many years and was approved to receive a New Hebrew name because of her miraculous story of death and rebirth. Instead of being recognized by Sarah, she is now recognized as Chaya Sarah.

For more information about AFE's and the research being done, please go to for the latest as they are more up to date than your doctors.

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