"Our lives and identities are unequivocally altered and reduced to “before” and “after.”
We were married less than two years when we decided to try for a baby. As the world faced a global pandemic, we were laying the foundation of our marriage. An interesting time to say the least. But now, here we were looking forward to our future and adding a baby to our pet-filled home.
“Let’s see what happens” was our initial mantra. I went off birth control and within four months we were pregnant. We couldn’t believe it. So quick, we thought. Thrilled as we were, I could not shake the notion of how incredibly fortunate we were for it to occur so easily. I considered myself familiar with miscarriages and infertility through peer experiences, so I made sure to stay mindful while cautiously optimistic.
Hearing the heartbeat at six weeks confirmed the pregnancy. We were equal parts excited and nervous as I am sure most first-time parents are. The holidays were coming, and although we wouldn’t quite be in the “safe zone”, we decided to share the news over Christmas with our close family and friends. I had my apprehensions; I knew the societal standard of not sharing before the end of the first trimester, but we knew it would bring such happiness to our family that we just couldn’t resist. Sonogram images and baby booties, tears, and laughter; it was a Christmas we will never forget. It is one of the few happy memories of this experience that I hold dearly.
We were 12 weeks along when our baby was diagnosed with an omphalocele. I was alone, as Covid precautions were back in full effect, at my first major scan with Maternal-Fetal Medicine. Routine I thought, as having a history of hypertension, I was already considered high risk. I eagerly ended work early for my appointment to see our baby and maybe even find out the sex. The ultrasound tech completed her imaging without eliciting any concerns and left the room noting that the doctor would be in shortly. Moments later, a doctor I had never met hurriedly entered the room and inquired where my husband was. Finding this question odd, I told her my husband wished he could come but due to the covid restrictions we were informed of, he was at home. In hindsight, I think I already knew something was wrong. I remember crying over the kitchen sink the night before the appointment. I told my husband I was just nervous, but I just felt something wasn’t right. Mother’s intuition I suppose.
I feel like I have never come home from that appointment. Time has been suspended since. I have difficulty projecting forward, yet I also can barely manage each passing day. I continue to feel trapped in a space between what was and what should be.
I stared at her blankly as she explained what the imaging revealed. Shock. Disbelief. Confusion. Feeling everything and nothing at the same time. The doctor told me I needed to call my husband to come to the hospital.
I was left alone crying in the exam room as my husband made his way to the hospital. On the monitor, they left the still image of my baby with what looked like a mass attached to its abdomen. An omphalocele is a rare condition where the abdominal wall does not form properly, leaving a hole in the belly button area, allowing organs to protrude outside of the body, covered by a thin sac. The doctor provided the grave outlook that this is commonly associated with genetic abnormalities including those that are “not compatible with life.” In-depth genetic screenings would be required to determine severity including a CVS that was conducted on the spot.
My routine prenatal appointment turned into five hours of anything but routine. I remember the walk to the car. We were shattered, numb, quiet, almost trancelike. Everything around us seemed blurry. Nothing felt familiar or real. It didn’t feel like the same car I drove to the appointment in, nor the jacket I put back on. Was this the same home I left? It was as if we exited the exam room into an alternate universe.
While awaiting test results we hardly understood, we were determined to learn as much as possible about Omphaloceles. Google became a gift and a curse. I joined the Mothers of Omphalocele Facebook group to see the stories of others and to prepare myself for the possible journey ahead. No two stories were the same. There were stories of milestones and stories of setbacks. Stories of triumphs and those of tragedy. The takeaway; Omphaloceles do not have linear trajectories.
During this time, we also went to the Children’s Hospital of Philadelphia for a second opinion. We met with their team including the chief of surgery who has cared for possibly the most cases of Omphaloceles in the country. The baby was determined to have what is considered a “giant” Omphalocele due to containing the liver, bowel, and gallbladder. However, now at only 16 weeks, it was impossible to determine survival or course of treatment. Omphaloceles are accompanied by varying post-birth complications including lung under-development. Multiple repair surgeries and an extensive NICU stay would be imminent.
We were left with a “grey” diagnosis and an internal battle of what felt like selflessness vs selfishness. We ultimately made the most difficult decision at 16w 5d to ensure our baby knew only our love and never pain. Thirty days from diagnosis to termination. Our lives and identities are unequivocally altered and reduced to “before” and “after.”
His name was Kane Wilder. He was diagnosed on January 31st, 2022, Omphalocele Awareness Day.
