A mother’s heartfelt account of her experiences caring for her daughter, who was born with Treacher Collins syndrome

Eliza Bahneman and her husband’s life were transformed on October 25, 2018, when their daughter Bella was born.

Although Bella’s early arrival caught her parents by surprise, the rare diamond she turned out to be was even more of a shock.

‘We’re pregnant!'” They are the best words to hear when thinking about starting a family. My husband and I tried to conceive for nearly nine months before we finally did. Nervousness and anxiety were beginning to take hold of me. Planning a family may bring up a whole range of feelings; it’s weird.

I am fortunate to have had my sister-in-law and a few close pals with me during my pregnancy. All of us were born within a few months of one another. I couldn’t have asked for a better person to talk through the ups and downs of pregnancy with.

Eliza Bahneman

So much has been thrown at us on this road, and I’ve learned much about life. There are times when we are ready for a shift and other times when we are not.

As our due date drew near, like most expectant parents, we began to feel the delight of finally meeting our little one. The nursery met all our needs and was prepared to receive our newborn. There was much anticipation amongst our loved ones and ourselves to see our final product. It was fascinating to observe which parental characteristics the infants inherited. Additionally, I was well aware of the aforementioned tales of nursing woe. My anticipation of forming a unique link with my kid was matched only by my apprehension about the many unknowns that lay ahead.

Our pregnancy went well. My uterus was shaped like a heart, so I was flagged as high-risk, but we learned that wasn’t true later on. Because I was 35 when I gave birth to Bella, I got monthly ultrasounds and all the other standard pregnancy screenings.

The results were all “normal.”

My husband had to work late on October 24, so I finished setting up Bella’s nursery and packing her diaper bag. I sent a photo of my pregnant tummy and a letter from Bella to her father through text message around 11:30, just before I went to sleep. I’m going to be early, Mommy says, so hello, Daddy! Sadly, she senses that her pregnancy will end soon. I eagerly anticipate our first encounter. The phrase “I love you, Daddy.”

My water broke around 1:15 a.m. on October 25, 2018. As it turned out, Bella’s arrival was a whole month early. I was scared since we hadn’t attended any lessons (which I discovered were unnecessary). It was almost time to go, but I still hadn’t finished getting ready; our car seat wasn’t installed, and my fingernails and hair were a disaster. Contrary to my expectations, labor began unexpectedly. My parents were called, and we all made a beeline for the emergency room. Work has finally become a pleasure!

During labor, Bella’s pulse rate would drop significantly if I stayed in the supine position, so I had to go to the side prone on my right. (It made sense in retrospect, given the narrowness of her airway.) After receiving an epidural and Pitocin, I felt sick and drowsy. I needed to turn to my right side after each push, but only briefly. Strange, bewildered, and unenthusiastic were the feelings I was having. I could see that a lot was transpiring. Everyone from the neonatal intensive care unit, my family, and the medical staff that helped me give birth were already in my room. We were told the baby was having trouble coming out after approximately 30 minutes of pushing. After being paged, my obstetrician joined the group. Due to the curvature of my pelvis, I needed assistance from two people to give birth to Bella. Great.

Bella finally made her way into the world after grueling 12-hour labor. She landed with the sun on her face, weighing in at 5.5 pounds. When she walked in, I saw that one of her ears was curled over quite tightly. I had heard that newborn infants had a peculiar appearance, so I didn’t consider it much. She was little, flushed, and defenseless. The anticipation of finally holding our little child was overwhelming. When I noticed anything was wrong, I was eager to embrace my kid with a smile and a sense of anticipation. I can’t believe no one congratulated me. What is wrong with my spouse? Is he so frightened and confused? My mother refuses to even look at me. The doctor should not have left. Many strangers just walked into my room, and I have no idea why. I was alone in a quiet room. Anybody uttered nothing. The void of sound ripped me apart and ruined my spirit. I lost it, trembling with fear, confusion, and disorientation. Even as I write about it, this event tears my eyes. I look back on the day that my baby was born and can’t help but feel guilty about it.

Eliza Bahneman

Many medical professionals and researchers arrived and departed while taking notes. A query along the lines of “What the heck is going on?” Why did it not work? They questioned why so many people were intruding on our personal time together.

I first saw Bella, who was definitely ‘different.’

What was meant to be an once-in-a-lifetime opportunity turned out to be terrifying? There was a clamor of conversation, yet the room remained quiet. Behind the curtain, I heard my father exclaim, “What is happening?” My mom pulled herself together as best she could and reassured my dad, “Things will be alright, but we don’t know much.”

“Mom, is it possible for me to have children once more?”

Eliza Bahneman

Those were the first words that came out of his mouth. That is really beyond my comprehension. There must be a justification for why you choose to use those particular terms. Whatever feelings I may have been going through at the time are completely gone from my recollection. It’s been a long time. As she continued to look at me, she continued to say, “Don’t worry about anything, and love.” We are confident that everything will go for the best.

Doctors said they needed to get Bella to the NICU immediately to start her on IVs, and my husband would be following. As of yet, I had not even held my newborn.

‘Wait!’ I said. “I need my arms around my baby.” I felt their arms around my chest as they placed Bella there, and her beautiful eyes gazed up into mine. That face, “Mommy, I’m terrified,” will stay with me forever. It was reassuring to me as well as soothing.

I reassured her in a hushed tone that she would be safe no matter what. My mother remained with me when my husband and newborn child left the room. Never before had I felt so lonely. Why us?

Eliza Bahneman

Within an hour, I was back with my family. I had my baby in a hospital with a button you press after delivery to start a lullaby. I was prompted to press the button after being taken into the neonatal intensive care unit. Not that I wanted to, anyhow. I certainly wasn’t in a celebratory mood. No one could have told me that my kid would be alright or that she would ever return home. I sobbed silently to myself while the lullaby played. This is the last time I make preparations for anything. Somehow, I felt like life had failed us. By that point, it didn’t even matter. I was becoming increasingly irritated as texts from my girlfriends continued to pour in. I ignored all of them and ultimately silenced my phone. It seemed unjust to me at the time. They went home, cuddled their newborns, and had a party while we were left wondering what would become of us.

At long last, I successfully made contact with Bella and Erik. For Erik and I to have quality time cuddling and kissing Bella, we were given some alone time together.

Well, there are two disorders, but one is worse than the other, my husband explained after he “thought” he had identified our kid. It better be Treacher Collins. As a group, we read the story, saw the accompanying images, conducted our research, and shed many tears.

Eliza Bahneman

Thank goodness a Standford ENT was accessible that night. Bella was examined, and both diagnoses were confirmed. We were given several choices and told a decision was due the next day.

We had to kiss our baby goodbye and return to our bed since it was already beyond midnight. Getting away from her was pretty tricky. Defending her was a priority for me. Maybe she was confused about why we couldn’t be with her, which bothered me. I was curious when I considered how she would have felt if she had been ignored. I felt like my heart was falling as she desperately tried to latch on to my breast, and I couldn’t feed her. In doing so, I was effectively rejecting my kid. Bella craved closeness and security from her mother; she was hungry and needed nourishment. That’s what I was unable to provide her.

Eliza Bahneman

Back in our bedroom, my husband and I discussed our sentiments, wept, said our goodnights, and then drifted off to our own thoughts.

The next day was a little less chaotic. Our parents came to be with us early. Choosing between UCSF Children’s Benioff and Stanford Children’s was a vast choice. My closest buddy is a doctor, so we thought it would be wise to contact him. “Hey Noel, Bella is in the neonatal intensive care unit. She’s not like everyone else, and neither is the path we’re on, but please assist me. Family and friends are essential things in life. Nothing to worry about, Liz. Don’t worry; I’ll be there in a minute to make sure everything’s okay.

Once I called, Noel arrived at our location less than 20 minutes later. She listened to us weigh our alternatives and then reached out to Kevin, a local physician, for advice. Thanks to Noel’s phone contact, we could get in touch with top-tier medical professionals. Carol, who heads up Children’s Hospital’s craniofacial division, texted me not than an hour after I left the hospital. We set off on our quest, and Bella’s community continued to expand.

Eliza Bahneman

On October 27, 2018, we were sent to Children’s Benioff in Oakland. When I entered Bella’s room, I saw that she was covered with cables. Small and frail, she seemed to be made of paper. She probably questioned why her little body was being mistreated. As she was being moved into the incubator, I sang to her. We reassured her by cradling her little hands and assuring her that her parents followed close behind.

Bella’s medical ordeal started the moment we stepped foot in the hospital.

Every time we entered or left the NICU, we had to follow strict rules. Several neonatologists and other professionals met us.

Bella needed more testing, including x-rays, tests, and assessments, to determine the extent of her injuries. Every night we had to leave Bella at the hospital. Motherhood was challenging with a brand-new kid, a unique condition, pumping, and the daily information presented.

Eliza Bahneman

As soon as we returned to the house, we went into Bella’s room, where we sobbed together. We had no idea that our home would be vacant when we returned. When I woke up in the middle of the night to pump, I could check in on Bella via the NICU’s live video feed. Through various forms of media, my daughter and I could communicate. Honestly, I considered it the norm for me.

About a week later, doctors identified Bella’s affliction as Treacher Collins, a rare genetic disorder that prevents the facial bones from fully maturing. It is only at birth that this condition manifests, and ultrasound detection is only successful in around 10% of cases.

Eliza Bahneman

Bella was born with several congenital disabilities, including a hard cleft palate, hearing loss, a short and recessed jaw, a narrow airway, and a small airway. Because of this, at a minuscule 7 pounds, Bella had her first operation to acquire a g-tube. Bella is fed via a stomach tube. We spent eight weeks in the neonatal intensive care unit. Our residence was in the neonatal intensive care unit. Bella spent the day entertained by my parents, Erik’s parents, and ourselves. Not only did we have one of my fantastic buddies, a nurse at the hospital, and check on Bella during her shifts, but she also called me in the evenings when she got home to ensure everything was okay.

Eliza Bahneman
Eliza Bahneman

We were given the green light to bring Bella home on December 8, 2018, after we had completed our medical and caregiving training. My husband and I took on the dual roles of mother and nurse for our daughter. Numerous unexpected events have occurred in our lives, such as trips to the emergency room and near-choking incidents at home.

The gap between where we began and where we are now is a significant one. The NICU training that we received was beneficial to me in rescuing my child on several occasions.

Eliza Bahneman
Eliza Bahneman
Eliza Bahneman

During her 16 months on our planet, Bella has undergone three primary in-hospital operations and one minor outpatient procedure. Babies born via TCS often experience between twenty and sixty processes. Most have trouble hearing, and others have trachs to help them breathe.

Eliza Bahneman

In addition to an early start with the school system, Bella participates in occupational therapy, speech therapy, a music program for children with hearing loss, and sign language. The road we’ve traveled and the established routine are unique, but I wouldn’t trade them for the world. I’ve learned much through this ordeal as a mother, sister, wife, friend, and acquaintance.

Eliza Bahneman

We can’t always anticipate life’s twists and turns, which might leave us vulnerable when unexpected events occur. Life is precarious, stunning, and terrifying all at once. I feel lucky to be able to provide Bella with the basics of life. A large community of people believe in and cheer for Isabella, including her friends, family, customers, and followers on social media. It’s been less of a shock to the system to have everyone else there for the ride.

Eliza Bahneman
Eliza Bahneman
Eliza Bahneman

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