Catholic Transcript Magazine of the Roman Catholic Archdiocese of Hartford Connecticut

Friday, May 25, 2018

Each time a new member joins the group, I weep. "The group" is an Internet support network for about 150 women around the world who have survived the catastrophic complication of childbirth called amniotic fluid embolism (AFE). The group also includes husbands and families of women who did not survive. Most don’t.

Amniotic fluid embolism is the leading cause of death during labor in the western world. Fortunately, this complication is extremely rare. When it happened to me in 1991, only the senior obstetrician at the hospital had seen a case, and that was back in the 1950s. Unfortunately, AFE kills most of its victims. Survivors are usually brain-damaged, and many suffer permanent physical problems.

Several years ago, a woman joined the online network, sparked not by personal experience but by curiosity about this most extraordinary of clubs. After reading a variety of posts on the Web site, she wrote a scathing entry. She called us whiners, and said that, as survivors, we’re the lucky ones, so we should quit complaining and move on.

We were stunned. Are we fortunate to be alive? Yes, of course we are. But some survivors are living out their years in long-term care facilities, so badly brain-damaged that they do not recognize their children. There are husbands and grandmothers who are raising children alone. Women have to relearn how to walk, how to grasp a pen and speak and feed themselves.

Those of us who returned to our families face months or years of recuperation and therapy. Lucky to be alive? Yes. But what of the moms whose babies died as a consequence of the AFE? Nothing can prepare you to visit your child in the cemetery. It’s devastating. And since lifesaving measures often include emergency hysterectomy, the woman’s childbearing years come to an abrupt end. You’ll understand if not every survivor feels lucky.

Many of us sustain neurological damage so we can no longer organize, sequence or focus very well. Some cannot pay attention long enough to grasp new information. I have not read a book for 18 years. I have trouble following group discussions, meetings, story lines and directions.

Whiners? I don’t think so. We’re just trying to cope.

That same woman also criticized AFE survivors who suffer Post Traumatic Stress Syndrome. How bad could it have been? she asked in mockery. You weren’t in battle; there were no explosions. You were in a hospital. So you had a complication. Deal with it.

Once again, we tried to explain. Most of us were awake and mentally alert when the symptoms gripped us: pulmonary failure, cardiac arrest or massive hemorrhaging. Many survivors tell of hearing the screams of relatives around them, but being unable to communicate. More women than you want to know were semiconscious while extreme emergency surgery was performed by a doctor who had given up the mother for dead. I’m talking about a Caesarian section with no anesthesia. None. Picture the scene: blood everywhere, your mother is screaming, your husband is passing out, the staff is calling a code, a doctor is sitting on your chest breaking ribs as he performs CPR, and you are trying to gasp for air, gasp for life, as they give up and declare you dead.

In the aftermath, many women spend weeks in a coma, unable to speak, yet faced with flashbacks and nightmares in the gray dawn of consciousness.

Whiners? Hardly.

Peter and I are no-nonsense people who are not inclined to coddle ourselves, but I experienced flashbacks. Peter had nightmares for months. So did the doctor.

Why am I writing this to readers who surely will never encounter this situation? I believe the principle is universal: "Never criticize a man until you have walked a mile in his moccasins." We are so quick to criticize without knowing the facts. Even when we know the facts, we don’t know what burdens another man carries. That’s why God demands, "Why do you pass judgment on your brother? And why do you despise your brother? . . . Let us no more pass judgment on one another." (Rom 14)

My AFE has softened me to others’ pain and made me less inclined to judge, more inclined to give the benefit of the doubt. And all the while, I weep each time there’s a new member of the club that nobody wants to join.

Regina Cram lives in Glastonbury and is a freelance writer.