Eliza Bahneman and her husband experienced a life-changing event on October 25, 2018, with the arrival of their daughter, Bella.
Bella’s early arrival was a surprise to her parents, making her entrance into the world one of the most cherished treasures imaginable. During the nine-month journey, Eliza’s feelings of anticipation and nervousness steadily increased. The array of emotions that accompany the thought of bringing children into the world is vast and varied. And here’s the entire incredible story, being told from Eliza’s perspective.
I was lucky enough to share my pregnancy journey with my sister, sister-in-law, and a close circle of girlfriends, all of whom were just a few weeks or months apart in their own pregnancies. It was invaluable to have people with whom to weigh the pros and cons of this experience.
This journey, unpredictable as life itself, has imparted significant lessons. While we may not always be ready for the changes that come our way, sometimes, we find ourselves surprisingly prepared.
As our expected arrival date drew near, the anticipation of welcoming our baby into our lives grew. Our home was ready and waiting for our new addition, with both our families and ourselves excited to see the fruits of our love. The joy of discovering which traits our baby shared with each of us was immense.
I was also bracing myself for the challenges of breastfeeding, which I had heard could be quite daunting. The prospect of these changes made me anxious, yet I was equally excited about the opportunity to bond with my baby.
My pregnancy journey was smooth and joyful. Despite concerns related to my heart-shaped uterus, it turned out not to be the reason I was considered high-risk. Being 35 at the time of Bella’s birth, I underwent all the recommended prenatal screenings and monthly ultrasounds, all of which confirmed that everything was ‘normal.’
On the night of October 24th, as my husband worked late, I was adding the last details to Bella’s nursery and packing her diaper bag. Just before heading to sleep at 11:30 PM, I sent him a photo of my belly alongside a playful message from Bella saying, ‘Hi, Daddy, Mommy has a hunch I’ll be arriving early. She feels her days of being pregnant are numbered. I’m excited to meet you. Love you, Daddy.’”
Then, in the early hours of October 25, 2018, at 1:15 AM, my water broke, signaling Bella’s arrival a whole month ahead of schedule. Panic set in; we hadn’t attended any prenatal classes (which I later realized weren’t as crucial as I’d thought), my bag was only partially packed, the car seat wasn’t installed, and I was nowhere near “ready” in terms of my personal grooming. This was far from the composed labor I had envisioned. We quickly called my parents, and together, we made a beeline for the hospital, marking the start of the labor adventure.
During labor, Bella’s heart rate showed worrying dips, necessitating that I remain on my right side, a position that later aligned with her having a narrow airway. The combination of the epidural and Pitocin left me feeling both sick and exhausted. I was instructed to push at the opportune moments, only to then return to lying on my right side. The experience was filled with confusion, astonishment, and a surreal feeling of detachment, amid the whirlwind of activity around me.
In my room, the presence of my mother, husband, delivery nurse, midwife, and the NICU team was already established. After around 30 minutes of pushing, it’s clear that the baby was struggling to make her way out. My OB doctor was summoned to join the assembled group. My pelvic shape needed the assistance of two people for Bella’s delivery.
After enduring 12 hours of labor, Bella made her grand entrance, weighing five and a half pounds and arriving in the sunny-side-up position. I noticed her slightly folded ear, but given the commonality of newborns having unique features, I didn’t dwell on it. She appeared so small, so red, and utterly vulnerable. Filled with anticipation, I was all smiles, looking forward to embracing our baby girl, when a sense of unease began to settle in.
Where were the celebratory congratulations? Why did my husband look afraid and confused? Why couldn’t my mother meet my gaze? And why did my doctor quickly exit the room? The influx of additional people into my room only added to my confusion. A heavy silence filled the space, a silence so haunting it felt as though it was tearing me apart, leaving me shattered and bereft. Tears began to flow as I shook with fear, confusion, and a sense of being utterly lost. I cried once again as I reflected on those moments, marked by the absence of celebration for my daughter’s birth.
Specialists came and went, jotting down notes as they moved. I found myself questioning, what’s going wrong? Why is our intimate moment being invaded by so many? When my eyes finally met Bella’s, it was clear she was “not normal.”
What was supposed to be a joyous occasion had taken a distressing turn. The room felt chaotic. “What’s going on?” my father demanded, bursting in from behind the curtain. Trying to maintain composure, my mother assured him that things would be alright.
‘Mom, can I have kids again?’
Those were the first words I uttered, though I can’t fathom why those specifically came to mind. The emotions I was grappling with at that moment are now just a blur. “‘Sweetheart, don’t think about anything right now,” she softly responded, turning to comfort me. “Everything will work out in the end.”
The doctors informed us that Bella needed immediate NICU care and would be attached to IVs, with my husband accompanying her. I had not yet had the chance to embrace my newborn.
‘Wait! want to hold my baby.’ I shouted. They gently placed Bella against my chest, and as she gazed into my eyes with a tender look of fear, it was a moment etched in my memory forever—a look that seemed to plead, ‘Mommy, I’m scared,’ yet simultaneously offered me solace.
I whispered to her, promising eternal protection, watching as my husband took our baby to the NICU, leaving just my mother and me in the room. The sense of fear was overwhelming. “Why us?” I wondered.
About an hour later, I was reunited with my husband and baby. In the hospital where I delivered, there’s a tradition of pressing a button post-delivery to play a lullaby hospital-wide. As I was wheeled to the NICU, they suggested I press the button. But I resisted; it didn’t feel like a time for celebration. Uncertain of when, or even if, my baby would be coming home or be well, the gesture seemed incongruous with my feelings.
Tears fell quietly as the lullaby echoed through the hospital. The thought that I would never engage in such preparations again crossed my mind. Suddenly, nothing else mattered.
My frustration boiled over as messages from friends began to flood in. I couldn’t bring myself to respond, eventually turning my phone off. It felt unfair. While they returned to their homes to embrace and celebrate with their newborns, we were ready for the news.
Eventually, Erik and I had the opportunity to bond with Bella, sharing a moment of skin-to-skin contact.
Erik broke the silence with a heavy heart, “Honey, I think I’ve figured out what our daughter has. There are two possibilities, one more severe than the other. Let’s hope for Treacher Collins.” Together, we poured over articles, examined photographs, and delved into research, our session punctuated with tears.
That evening, we were lucky to have access to an ENT specialist from Stanford. After examining Bella, she confirmed the possibility of two conditions. We discussed what steps to take next and were informed that a decision needed to be made by the following day.
Saying goodnight to our baby at midnight and having to leave her behind was heart-wrenching. I couldn’t help but wonder if she sensed our absence and felt abandoned.
The moment tore me apart when she instinctively sought to nurse, but I was restricted from breastfeeding her. It felt as if I was turning my back on my own child. Bella was seeking not just nourishment but also a deeper connection, warmth, and security from me—needs I was painfully unable to fulfill at that moment.
Back in our room, my husband and I shared more conversations and shed many tears, before exchanging goodnight kisses and retreating into our individual contemplations.
The following day dawned with a semblance of calm. Both sets of parents arrived early, offering their support. Faced with a critical decision between UCSF Children’s Benioff and Stanford Children’s hospitals, we thought it best to consult my best friend who has expertise in the medical field.
With Bella in the NICU, I reached out, “Hi Noel. Our journey has taken a unique path, and Bella is quite special. We really need your guidance now. The support of family and friends means the world to us.” Their assured us: “It’s okay, Liz. Don’t worry, I’ll be right over, and we’ll get through this together.”
Merely 20 minutes after reaching out, Noel was at our doorstep. Together, we reviewed our options, and she reached out to Kevin, a renowned local surgeon, to guide our decision-making process. Noel’s intervention opened doors to leading surgeons and healthcare experts for us.
Shortly after, I received a message from Carol, the head of the Children’s craniofacial department. Within that brief span, Bella’s care plan was set in motion, marking the beginning of our journey.
By Saturday, October 27, 2018, we found ourselves at Children’s Benioff in Oakland. Stepping into Bella’s room, I was greeted by the sight of her, small and fragile, entangled in a maze of wires. It was heartrending to think she might be wondering why she couldn’t simply be left in peace.
As Bella was gently placed in the incubator, I serenaded her, reassuring her by holding her tiny hands and telling her that her parents would be right by her side.
Upon arriving at the hospital, we embarked on Bella’s extensive medical journey. Entering and exiting the NICU required us to follow a strict protocol each time, where a team of doctors and neonatologists greeted us.
Bella was scheduled for further assessments, including x-rays and various tests, necessitating her stay at the hospital overnight. Navigating the complexities of new motherhood, a newborn with a rare condition, the regimen of pumping, and digesting daily updates was overwhelmingly challenging.
When we finally made it back home and entered Bella’s room, the reality hit us hard, leading to a shared moment of tears. The thought of coming home to an empty nursery was something we never prepared for. Throughout the nights, when I woke up to pump, I found solace in watching Bella through the NICU’s camera system, maintaining a connection with my daughter through the digital screen. This routine became my new normal.
About a week into her life, it was confirmed that Bella had Treacher Collins syndrome, a rare genetic condition characterized by incomplete facial bone development. Detectable via ultrasound in only about 10% of cases, its diagnosis is typically confirmed post-birth.
Bella’s condition included microtia, a severe cleft palate, a constricted airway, a diminutive and recessed jaw, and challenges with her hearing. At merely 7 pounds, she underwent her initial surgery to insert a g-tube for feeding directly into her stomach. Our eight-week tenure in the NICU felt like our second home
Throughout her stay, Bella was lovingly surrounded by her grandparents and us. I was also incredibly fortunate to have a close friend who worked as a nurse at the hospital. She made sure to visit Bella during her rounds, offering extra care and attention, particularly in the evenings when I returned home.
December 8, 2018, marked the day of our discharge after receiving thorough medical training to care for Bella. In addition to being her loving parents, my husband and I also took on the role of her caregivers. Our journey has been filled with unexpected challenges, including multiple trips to the emergency room and tense choking incidents.
Our journey has been nothing short of remarkable, and I truly mean that. The invaluable training we received in the NICU played a crucial role in allowing me to rescue my daughter on multiple occasions.
By the time Bella reached the age of 16 months, she had already endured three substantial inpatient procedures and one outpatient procedure.
It’s worth noting that most infants with TCS undergo an average of 20 to 60 procedures, if not more. While many experience some degree of hearing loss, others may require tracheostomies to aid in their breathing.
Bella participates in early start programs within the school system, engaging in occupational therapy, speech therapy, and even a music class tailored for children with hearing impairments.
While our journey and daily routines were far from easy, I wouldn’t exchange it for anything in the world. Through this entire experience, I’ve gained insights into the roles of a mother, sister, wife, friend, and even a casual acquaintance.
Life can throw unexpected surprises our way, and sometimes, we find ourselves unprepared for the changes it brings. Life can be delicate, beautiful, and at times, filled with challenges.
I find immense joy in being able to provide Bella with all the essentials she needs. She has a vast support network, friends, family, customers, and online users. With everyone aligning with our journey, adapting to our routine has become much smoother.
Eliza’s story was truly inspirational and nothing short of a miracle. Bella is a truly unique and beautiful child, just like you and your husband. Keep your strength up for your little girl.