We are fortunate to reside in a city with a top-notch children’s hospital. Little did we know when I went into labor at just thirty weeks that this facility would become our second home, where my son, Oliver, would spend his first three months.
The call from the Mayo Clinic with the amniocentesis results arrived mere hours before my labor began. Our son had a rare and often misunderstood condition—Beckwith-Wiedemann Syndrome, a term that took me years to learn how to spell. This syndrome can lead to overgrowth of certain organs, distinctive markings on the ears, macroglossia (an enlarged tongue), increased risks for specific cancers, and much more. Or perhaps less. The way it would manifest in Oliver remained uncertain.
When he entered the world so abruptly, with his hair matted down, tongue protruding, and those unique ears, he resembled a tiny punk rocker. While undeniably cute, this appearance was impractical; his tongue blocked his airways, making it impossible for him to breathe or eat independently.
During those initial weeks in the NICU, our routine was both comforting and terrifying. The ward was decorated with cheerful images of suns and superheroes, and I could trace a path of blue squares leading to green dots and yellow triangles on the floor tiles to reach my child. I brought my bag of breast milk, pumped in solitude at home, and offered it to the nurse as if it were an offering. This was my ticket to see him. After presenting my “admission fee,” I would slowly make my way to his incubator, gently laying my gloved hands on him like a benediction, whispering a prayer for his recovery. His chest rose and fell in sync with the ventilator, its rhythmic hisses and sighs becoming the backdrop of our lives.
When my husband and I took the significant step to allow doctors to perform a tracheotomy, we believed this was the most critical decision we would face as parents. We had to open his body to let air flow in.
Fortunately, that decision proved to be the correct one, leading to a stable state that allowed us to navigate our way through those colored paths back to home.
Fast forward to Oliver’s one-year appointment, and I found myself in another brightly lit room in that same hospital for a follow-up with the developmental clinic. This room, adorned with airplanes in vibrant colors, became the setting for yet another pivotal moment. After enduring a series of challenging tests, Oliver was officially diagnosed with cerebral palsy.
While this news wasn’t unexpected—our suspicions had been raised months earlier during a brain scan in the NICU—I felt a wave of emotions wash over me as the doctor noted “cerebral palsy” in his expanding medical chart. She repeatedly assured me, “This is a positive thing. It will unlock resources for him.” I absorbed her words quietly, planning to process them later.
Soon after, we were assigned a neurologist along with a geneticist. Physical, speech, feeding, and occupational therapists joined the team, creating a whirlwind of “ists” in our lives.
When Oliver was reassigned to a different geneticist at age four, who suggested further testing, I began to question the necessity of additional evaluations. I understood the importance of therapists helping him to communicate, walk, eat, and grasp a crayon. They were guiding him toward greater independence. Yet this new specialist wanted to send his genetic material back to the Mayo Clinic for “investigative purposes” and to re-evaluate his prenatal diagnosis. She aimed to determine if any other chromosomal anomalies existed alongside his syndrome and cerebral palsy.
I reminded myself that this was a research hospital. I recognized the eager glimmer in a resident’s eye when they encountered Oliver’s complex case. She was youthful and enthusiastic—qualities I no longer possessed. But as I had always done, I nodded, wheeled my son out, and went home to reflect.
Later that evening, as we faced each other on the couch like contestants on a game show, my husband and I asked the hard questions: “Would this new information lead to treatments we haven’t already explored?” “Would it benefit the therapists in understanding how to help him?” “Would the testing itself take more from him than he could endure?” “If the results were inconclusive, would it only add confusion?” “Is more always better?”
After hours of discussion that stretched into the early morning, we ultimately decided against further testing. We already had sufficient information. We were doing everything possible, and Oliver was making progress in his own unique way. While the geneticist might argue that knowledge is power, we felt we did not need new paths to explore; we needed to support our son on the journey he was already navigating.
In conclusion, each family’s journey is unique, and sometimes the best path is to focus on the present rather than chase after more answers. If you are considering fertility treatments or home insemination, resources like March of Dimes can provide valuable insights. You may also find helpful information about home insemination options at Cryobaby. For more personal stories and insights, visit Modern Family Blog.