Why isn’t anyone wishing me well? Sadly, there was no celebration of my daughter’s birth.

Eliza Bahneman and her husband’s lives underwent a permanent change on October 25, 2018, with the arrival of their little one, Bella.

Bella caused a surprise for her parents by arriving a couple of weeks ahead of schedule. Her unexpected arrival was akin to the arrival of a valuable gem. The declaration “We’re expecting a baby!” is something everyone anticipates when making choices about family planning.

The complete pregnancy journey spanned approximately nine months for my spouse and me. During this time, my apprehension and unease started to increase. The thought of becoming parents elicits a myriad of emotions.

I was lucky that my sister, sister-in-law, and a couple of close friends were aware of my pregnancy. Our pregnancies were staggered by a few weeks or months. It was truly delightful to have someone to share the ups and downs of pregnancy with.

Apart from the reality that unexpected challenges can arise at any moment, our journey has imparted valuable lessons about life. Change doesn’t always come when expected, but sometimes we are prepared for it.

Like many other pairs, as our delivery date drew near, we started experiencing the thrill of welcoming our baby into the world. The environment was perfectly arranged to welcome our newborn, and both our families and we were enthusiastic about revealing what we had created. Witnessing the traits our baby shared with each of us brought immense happiness.

Furthermore, I had been informed about the difficulties that nursing could bring. I was both apprehensive about the impending adjustments and excited about forming a strong connection with my child.

My experience with pregnancy was enjoyable and uncomplicated. It was later revealed that my heart-shaped uterus wasn’t the cause for being labeled as high risk. Due to giving birth to Bella at the age of 35, I underwent all required prenatal assessments alongside my monthly ultrasound scans. All the results returned as ‘typical.’

During the night of October 24th, my spouse was occupied with work while I was putting the finishing details on Bella’s room and organizing the diaper bag. Just before I retired to bed at 11:30, I sent a photo of my belly along with a message from Bella to her dad. It read, ‘Hello, Daddy, Mommy has a hunch that I might make an early entrance. She senses that her pregnancy won’t last much longer. I’m excited to meet you. Love you, Daddy.’

At 1:15 a.m. on October 25, 2018, my water broke, and Bella’s arrival occurred a month ahead of schedule. I was in a frenzy because we hadn’t taken any classes (which I later discovered weren’t really necessary). My hospital bag was only partially packed, the car seat wasn’t installed yet, and my hair and nails were in disarray. It was definitely not the labor scenario I had envisioned. In haste, we called my parents and hurried to the hospital together, marking the start of the labor adventure.

Throughout my labor, Bella’s heart rate would frequently dip, necessitating that I lay on my right side and be positioned sideways. This made sense later due to her narrow airway. The combination of the epidural and Pitocin left me feeling nauseous and fatigued. I had to push at the right moments and then shift back to my right side. My emotions were a mix of strangeness, bewilderment, and a lack of enthusiasm. There was a sense that a lot was unfolding.

In my room, there were my mother, husband, the delivery nurse, midwife, and NICU staff. It became evident that after approximately 30 minutes of pushing, the baby was encountering difficulty during the birthing process. Upon being summoned, my OB doctor joined the assembled team. Because of the configuration of my pelvis, the assistance of two individuals was necessary to bring Bella into the world.

After a 12 hour labor, Bella finally made her entrance. Weighing five and a half pounds, she arrived in a sunny side up position. I noticed a petite folded ear as she emerged. Familiar with the idea that newborns can appear quite distinct, I didn’t think much of it. She appeared tiny, reddish, and entirely dependent. I was excited to meet our new daughter and was all set, with a smile on my face, to hold her. However, it was at that moment when I realized that something wasn’t quite right.

Where are the congratulations for me? Why does my partner seem so unsure and fearful? My mother avoids making eye contact, but why? The doctor exited, but for what reason? Why are more and more people coming into the room? The atmosphere in my room was hushed, devoid of any sound. The silence tore at me, leaving me shattered and grief-stricken. I began to cry, shaking with a mix of fear, confusion, and being adrift. As I write this, tears well up, as I reflect on those moments with a heavy heart, realizing that the birth of my daughter went unrecognized.

Various experts came and went, jotting down observations. “What’s occurring? What went awry? Why is our intimate time being intruded upon by so many?” When I finally glimpsed Bella, she seemed to appear “unusual.”

What was supposed to be a momentous occasion became disconcerting. The room was in complete disarray. “What’s going on?” my father exclaimed as he hurried in from behind the curtain. “It’ll be alright, we just don’t have all the details yet,” my mother reassured my dad after regaining her composure as best as she could.

“Mom, can I become a parent again?”

These were the first words spoken, although I can’t fathom why. I can’t explain the reason for those specific words. Even the emotions I was undergoing at that moment slip from my recollection. “Darling, don’t worry about anything at this moment,” she murmured as she turned towards me. Everything will work out positively in the end.

The doctors informed us that Bella had to be urgently taken to the NICU for IV treatments, and my husband would accompany her. I hadn’t even held my baby yet.

“Wait!” I exclaimed. “I want to hold my child.” They placed Bella on my chest, and she gazed into my eyes with such gentleness. I’ll forever remember that gaze, one that seemed to convey, ‘Mommy, I’m frightened.’ Yet, it was also a look that brought solace to me.

“No matter the circumstances, I’ll always keep you safe,” I reassured her. I observed as my husband left the room with our baby, while my mother stayed behind beside me. A profound emptiness enveloped me. Why did this have to happen to us?

I was eventually able to reunite with my husband and child about an hour later. At the hospital where I delivered, there’s a button you can press to hear a lullaby. I was instructed to press it as I was taken to the NICU. However, I hesitated. It wasn’t a celebratory moment. I had no certainty about when or if my baby would come back home or be okay.

Tears streamed down my face in silence as the lullaby played. I vowed to never make another plan. I believed that life had disappointed us. Nothing seemed significant anymore.

As messages from my friends started pouring in, my anger grew. I ignored every message and switched off my phone. It felt so unfair. They went home, holding their babies, and rejoicing, while we remained uncertain about what the future held.

Finally, I had the chance to interact with Bella and Erik. We were provided a private space to bond with Bella through skin-to-skin contact.

“Darling, I think I’ve identified our daughter’s condition,” my husband shared. “There are two possible syndromes, but one is more severe than the other. Let’s hope it’s Treacher Collins.” Together, we read the article, examined pictures, conducted research, and shed tears.

We were fortunate to have an ENT specialist from Stanford available that night. She assessed Bella’s condition and confirmed the presence of the two potential disorders. We discussed our choices and were advised to make a decision the next day.

At midnight, we had to say goodnight to our little one and head back to our room. Leaving her was a deeply challenging task. I felt a strong need to protect her. I wondered if she might wonder why we couldn’t stay with her. I questioned if she might feel unwanted.

I felt a profound internal conflict as she moved closer to my breast, yet I was prevented from breastfeeding her. I was essentially rejecting my own child. Bella sought a stronger connection with her mother, a greater sense of closeness, and a feeling of safety. Additionally, she needed nourishment to satisfy her hunger. These were the very things I was unable to offer her.

After returning to our room, my husband and I revisited our emotions, engaged in further conversation, shed more tears, exchanged goodnight kisses, and retreated into our individual contemplations.

The following day, there was a slight sense of calm. Our parents both arrived early to provide support. With options between UCSF Children’s Benioff and Stanford Children’s, we faced a crucial decision. Taking this into account, we decided it would be wise to consult my close friend, who had a background in the medical field.

Bella is here with us in the NICU, “hello, Noel.” Even though our journey is unique and she has her own distinctiveness, I still require your support. Our loved ones mean the world to us. It’s okay, Liz. No need to fret. I’ll come over right away, and everything will be okay.

Less than 20 minutes after I contacted her, Noel arrived at our residence. After discussing our options, she reached out to Kevin, a local surgeon, to assist us in making decisions. Noel’s call provided us access to the most skilled surgeons and medical experts.

In under an hour, I received a text from Carol, who oversees the craniofacial department at the Children’s hospital. Bella’s condition had worsened, marking the beginning of our journey.

On Saturday, October 27, 2018, we were transferred to Children’s Benioff in Oakland. Upon entering Bella’s room, I noticed the numerous wires surrounding her. She appeared so tiny and fragile. I imagined she might have wondered why her delicate body couldn’t be left undisturbed.

While she was being shifted to the incubator, I sang to her. Holding her tiny hands, we assured her that her parents would be close by.

Upon reaching the hospital, Bella’s medical journey commenced. Each time we entered or exited the NICU, we followed a specific procedure. We were greeted by a multitude of doctors and neonatologists.

Bella had to undergo further examinations, including x-rays, tests, and assessments. During the nights, Bella had to stay at the hospital. Balancing motherhood, taking care of a newborn, managing a rare syndrome, pumping, and processing the daily updates was an incredibly challenging task.

Finally back home, we entered Bella’s room, embraced each other, and tears started to flow. We never expected to return home to an empty space. During the nights, while I would wake up to pump, I accessed the NICU cameras to watch over Bella. I maintained communication with my daughter through digital means. This became my new routine.

About a week later, it was determined that Bella had Treacher Collins syndrome, a rare genetic condition that hinders the complete development of facial bones. This syndrome can only be identified through ultrasound in about 10% of cases, and only when it’s present at birth.

Bella was born with microtia, a severe cleft palate, a constricted airway, a small and recessed jaw, as well as hearing difficulties. Due to these challenges, Bella underwent her initial surgery to have a g-tube when she was only 7 pounds. This allowed her to be fed through a stomach tube. Our stay in the NICU persisted for eight weeks, during which the NICU became our temporary home.

Throughout the day, Bella was kept engaged by a combination of my parents, Erik’s parents, and ourselves. In addition to our immediate families, I was fortunate to have a wonderful friend who works as a nurse at the hospital check on Bella during her shifts, particularly in the evenings when I was already at home.

On December 8, 2018, after receiving proper medical training to care for Bella, we were given permission to leave the hospital and return home. My husband and I weren’t just her parents; we were also her caregivers. We’ve encountered numerous challenges, including several emergency trips to the ER and instances of choking while at home.

We’ve made significant progress, and I mean a truly substantial journey. I’m grateful for the training we obtained in the NICU, as it has enabled me to rescue my daughter on multiple occasions.

By the time Bella reached 16 months old, she had experienced three substantial procedures requiring hospitalization, along with one outpatient procedure.

Typically, Treacher Collins syndrome infants undergo around 20 to 60 procedures on average, if not more. The majority of them face varying degrees of hearing impairment, while others may require tracheostomies to aid in breathing.

Bella participates in the school system’s early start program, receives occupational therapy and speech therapy, and also joins a music class specifically designed for children with hearing impairments.

Even though our journey and everyday experiences take a unique route, I wouldn’t exchange it for anything. This entire process has taught me a great deal as a mother, sister, wife, friend, and individual connecting with others.

Due to life’s unpredictability, there are instances when we’re unprepared for change. Life is delicate, beautiful, and at times, filled with moments of darkness.

I’m pleased that I can provide Isabella with life’s essentials. She has a strong support network comprising friends, family, customers, and online followers. Our routine has become more familiar now that everyone is walking alongside us.

Thank you for sharing your story! Isabella is both lovely and exceptional, just like you and your husband. Stay resilient for your daughter. ????