Advocating for yourself

Stephanie Arnold had always dreamed of having children. She met her husband, Jonathan, later in life and together they went through three rounds of in vitro fertilization to have their daughter Adina. When Adina was 3, they decided that they wanted to try for another child. This time, it took seven rounds of in vitro for 42-year-old Arnold to conceive. The family was overjoyed, and for the first 20 weeks of her pregnancy, everything seemed to be perfect.

The family was splitting time between Chicago and New York City because of work commitments, so Arnold had a dedicated ob-gyn in each city. At 20 weeks into her pregnancy, both doctors confirmed a diagnosis of placenta previa, a condition in which the placenta is located on top of the cervix. Her doctors assured her that this was perfectly normal, and as long as she refrained from lifting and exercise, she would be able to carry the baby to term.

Two weeks later, Arnold was convinced that would never happen. She began to have severe premonitions of her death.

“I could visualize my husband burying me, putting dirt on my casket,” she says. She repeatedly dreamed that she would need a hysterectomy and would hemorrhage to death.

“My dreams were so vivid, and so detailed,” says Arnold.

She was compelled to seek answers. Together, she and her husband went to visit a specialist at Northwestern University in Illinois. She was convinced that she needed a hysterectomy; the doctor asked if she had “been on the internet a little too much.”

“Everyone thought I was crazy. No one believed me,” remembers Arnold. However, as her premonitions grew stronger, she became more convinced that she was right. An MRI at 32 weeks of pregnancy revealed nothing abnormal. Rather than relieving her anxiety, this only increased Arnold’s fears, because she had no tangible cause for what could be wrong. By that point, she had been told by doctors that she could no longer fly until after her delivery, so she knew she would be having the baby in Chicago. She went for a special appointment with an anesthesiologist. By this point, she had experienced six total premonitions, including one that convinced her that she would need general anesthesia.

The meeting with the anesthesiologist went well, and although she did not know it at the time, the anesthesiologist flagged her file, and made a plan to incorporate extra crash carts and blood monitors into her delivery. This measure would eventually save Arnold’s life.

At home, Arnold began to write goodbye letters to her children and husband, and even mailed a goodbye letter to the embryologist who had helped her to conceive. She also posted on Facebook, requesting that friends who share her blood type, O-negative, donate so that she would have a supply on hand for her delivery.

On May 30, 2013, at 36 weeks of pregnancy, as she was feeding her daughter breakfast, she started to bleed all over the kitchen floor. She put her daughter into her car seat and drove straight to the hospital. As she kissed her daughter goodbye before being wheeled into labor and delivery, Arnold was convinced that “this was the last time [she] was going to see her.”

Arnold remembers that she “just felt like a ticking time bomb.” She grabbed the doctor’s hand and begged her to realize that there was “something wrong.” The doctor assured her that she would be fine, and as Arnold was wheeled into the operating room for a C-section, she made the conscious decision to “let go.”

“I just felt like I had said something over and over and it was out of my hands,” recalls Arnold. The last thing she remembers is soap being put on her stomach prior to the start of her C-section.

She woke up in the Intensive Care Unit six days later. Arnold suffered an Amniotic Fluid Embolism, which has a less than 15 percent survival rate. She was clinically dead for 37 seconds before doctors were able to revive her. The condition is so rare that none of the doctors on her team had ever experienced one in their careers. Unbeknownst to Arnold, her doctors had attended a conference where they had learned a life-saving method to handle the condition. This training, coupled with the measures taken by her anesthesiologist, saved her life. When her doctors had the hemorrhage under control, they transferred her to the ICU in a medically induced coma.

While in the ICU, Arnold had to have a hysterectomy due to the marriage of her placenta and uterus. She had three surgeries within 36 hours of being admitted to the hospital. During that time, she had more than 60 units of blood transfused into her body — more than three times the normal blood supply.

When Arnold came out of the coma, she could not sit up, could not eat, and required dialysis to repair damage to her kidneys. After six weeks, she was finally able to come off the medication and machines. She is the first recorded case of someone who suffered an Amniotic Fluid Embolism and survived, without any neurological damage.

“I felt something, and I said something,” says Arnold. Thanks to her persistence, doctors were able to prepare for the care that she would ultimately need to save her life. At first no one believed her, but Arnold was relentless in her quest to be heard.

“If doctors don’t believe you, you need to speak up louder,” she says.

Today, Arnold’s son, Jacob, is 10 months old. She is off all medications and she is unable to carry him — she is still rebuilding her muscle strength. She still has one more surgery pending to remove scar tissue to alleviate a resulting hernia. But this time, she has not had any premonitions. Her surgical team will be the same team that delivered Jacob.

“I just feel the normal fear anyone has before surgery,” says Arnold. But, if that feeling were to change, she would not hesitate to advocate for herself.

“Patients need to speak up for themselves,” advises Arnold, “you need to listen to your own body.”

This is the message that she hopes others will take away from her experience.

Jenny Torgerson is a teacher with a master’s degree in education from Bank Street College.