Dr. E, Pennsylvania

I used to think women like me were immune to this kind of loss, and I had the best of reasons: as a clinician and college professor specializing in death, dying, and bereavement, my role was always to support others who endured the tragedy of losing a loved one. My decision to pursue this career path came out of a strong love for serving others and an anxiety, from the time I was a child, about what happens when we die. I began my career as a pediatric oncology social worker, and found tremendous satisfaction helping others cope with what seemed to be insurmountable losses.

I am a high achiever and I have two master’s degrees (one in bioethics and ethics mediation) and a doctorate. I was the professional who was called in to help families make decisions like the one I had to face for my family. That decision centered around my pregnancy in its 20th week. Prior scans showed a healthy, active little boy, a child my husband and I waited to have until we were married and somewhat established in our careers. A child who was already real and exciting to us. A child with potential. But at our 20-week anatomy scan, what I’d thought would be a quick peek at our son’s growing internal structure became the darkest day of my life. To my untrained eyes, our boy looked perfect. But after waiting for two hours for the scan to be read, my husband and I were met by a physician and awkward medical student who grimly informed us that our son had Congenital High Airway Obstruction Syndrome, appropriately shortened to the name of CHAOS. Our little boy essentially had no working airway: his trachea was unformed, completely blocked off and fluids unable to be expelled through his mouth were accumulating in his body, ballooning his lungs, squeezing his heart, and flipping his diaphragm upside down. It was unlikely he would survive much longer in the womb, but we were encouraged to get a second opinion or, unfathomably, “terminate the pregnancy.” CHAOS is so rare that there are just over 50 recorded cases in medical literature and most of these children die in utero or shortly after birth. It is roughly estimated that the horrific condition affects 1 in 50,000 pregnancies. What a lottery to win.

In my years as a therapist and ethics consultant, I never judged the decisions of others and knew that my only role was to help and bring comfort. Yet I never identified myself as a woman who would end her own pregnancy. It was out of the question. I value life in all forms and have always been able to see potential in others, regardless of their limitations. With this mindset, I arranged an appointment at the local children’s hospital in the very department where I’d spent a year as a social work intern: fetal diagnostics. As a student, I’d witnessed so many parents told that there was hope for their unborn children via a groundbreaking surgery or revolutionary treatment plan. I’d read that the hospital had treated a few children with CHAOS and hoped the same could be done for us. Yet as I sat across from the surgeon and doctors I had once called my peers in the consultation room after a long day of tests, I was told otherwise. Our son’s CHAOS was not a situation that could be remedied or treated. His particular anatomy demonstrated no feasible approach for surgery: his airway was completely sealed. His heart was close to failing. If he did not die in utero, being born would either kill him or the interventions needed to give him an airway would leave him most likely brain-dead. He would probably die after that of a secondary infection in the neonatal intensive care unit. If he survived, our child would never be able to speak, cry, laugh, or know who his parents were. He would require intensive daily medical intervention to simply survive. Though most cases of CHAOS are serious, like most disorders they appear on a spectrum. Depending on fetal anatomy, some babies are able to have an airway established immediately after birth and live with a good quality of life with a tracheostomy. There are currently no CHAOS survivors who do not have such a “trach.” These children were luckier than my son–they were operated on and saved by the same team that told us there was nothing they could do. It was only a matter of time and it appeared the only decision or control we had was in how our son would die.

Inside my womb,  my son was safe, but only for the time being. He didn’t need a trachea or his lungs to breathe. But before long his heart would be smothered by massive lungs. His anatomy would be so destroyed that if he made it to the outside world, he could never live. My husband and I discussed our boy’s quality of life. What kind of existence would it be for him to be barely conscious, hooked up to machines, surrounded by the unfamiliar? Unable to call out to us, unable to know us, unable to comprehend his own situation? This would be torture. It would be selfish to keep our son alive for the sake of having a baby. To bring this child into a life of suffering seemed too cruel, too unfair.

I have heard others speak of miracles: what if our little boy had been born with a perfect airway after all, and all the scans and tests were wrong or misread? My view is that the miracle in our situation was modern medicine and its ability to save our child from a brief life of pain and misery. Of course we will never know what might have happened, but I believe that God also led us to the decision we made: the worst, most unrelenting, forever excruciating decision to end the pregnancy. We also learned, after the fact, that our son had Trisomy 16, an extra set of chromosomes that usually results in first trimester miscarriages. It is also spontaneously-occurring and extremely rare. Trisomy 16 is responsible for hosts of structural defects in fetuses, likely caused the CHAOS and by all indications may have led to other fatal birth defects we could not yet see at 20 weeks.

There truly are no words to describe the sensation in a woman’s body when she has been robbed of her child. Of her breasts filling with milk for a baby that will never eat. The psychological agony of having made the decision to end her child’s life, and the unrelenting judgment of those who have not walked her path. The constant, often desperate search for signs and symbols that he is alive, somewhere, happy, well, and thankful. The self-loathing for a body that failed to create and harbor a healthy son. The fury over abortion debates in this country that ignore circumstances such as hers or paint them as far more binary and black and white than any mother could imagine if she had not been faced with this “choice.” The search for kindness, companionship, and understanding in other mothers who also had to do this. Jealousy of naive pregnant women, and bone-crushing fear at being pregnant again.

My son died almost a year ago, two days before my birthday. This year, on the first anniversary of his death, we are joined by his little brother, born one month before my birthday. In my healthy, surviving son I seek indications of who my first boy might have been. I feel an invisible connection between the two of them. I marvel at how the second time around biology worked seamlessly to create the most beautiful child I have ever seen. I endure guilt that my now two-week-old son is here because his brother is not. We keep our angel’s ashes on the mantle as proof of his life. Sitting atop of them is a small winged figurine cuddling a dog. I know he would have loved animals, nature, the feeling of crawling into bed with us early in the morning after a good night’s rest. He would have danced at summer weddings when the days and lightning bugs lingered immobile in the oppressive heat. He would have loved to sing, like me.

I now dedicate a portion of my private practice to women who have experienced pregnancy loss in all forms. I have tried to create some hope from this dreadful experience, using my newfound perspective to help others stumble along this horrific path. It is the least I can do to honor my son’s legacy, but it never feels like enough. I am aware that my heart will never completely feel full again until we meet on the other side. Until then, I have vowed to continue to tell my story and add to the voices of women too afraid of judgment or bitter, hateful words about the decision they were forced to make, terminating a much-wanted, much-loved pregnancy in order to act in the best interests of their unborn child.

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