Mom shares touching story of raising a daughter with Treacher Collins Syndrome

The lives of Eliza Bahneman and her husband were permanently transformed on October 25, 2018, when tiny Bella was born.

In addition to surprising her parents by turning up a few weeks early, Bella also shocked them by appearing as one of the most precious jewels you can find.
“‘We’re expecting,'” When preparing for a family, these are the words that everyone wants to hear. My husband and I tried to become pregnant for nearly 9 months. I started to experience anxiety and trepidation. It’s incredible how many different feelings a person may experience before having children.



I was fortunate to have my sister, sister-in-law, and a few girlfriends know about my pregnancy. We were all a few weeks or months apart from one another. Having someone to discuss the advantages and disadvantages of your pregnancy with was wonderful.
Aside from the reality that life might throw a massive curveball at any time, our path has taught me a lot about life. We are not always ready for change, but we are sometimes.

Like other couples, as our due date approached, we began to feel the thrill of bringing our little one into the world. The space was ideal and prepared to receive our infant. Both our family and we were eager to show them what we had produced. Observing the characteristics the infants shared with each parent was so much joy. Additionally, I had heard a lot of tales about how challenging nursing can be. I was anxious about the upcoming changes as well as looking forward to developing a relationship with my child.

Pregnancy was wonderful and simple for me. We eventually learned that my heart-shaped uterus was not the reason I was deemed high risk. Because I gave birth to Bella when I was 35, I had all the necessary prenatal tests in addition to my monthly ultrasounds.


The results were “normal.”

My husband was working late on October 24th, and I was putting the finishing touches on Bella’s nursery and diaper bag. I emailed Bella’s father a letter and a photo of my growing tummy right before I went to bed at 11:30. “Hello, Daddy. Mommy believes I’ll arrive early.” She senses that her pregnancy won’t last for very long. I’m eager to meet you. I adore you, Daddy.



My water broke around 1:15 in the morning on October 25, 2018. Bella would be here one month early. We hadn’t taken any lessons, which made me anxious (though I subsequently realized you actually don’t need them). My hair and nails were a disaster, my luggage was only partially packed, and our car seat hadn’t yet been fitted. Not how I had imagined going into labor. We ultimately decided to contact my parents and rush to the hospital together. The enjoyable part of labor started!

I was forced to labor on my right side while lying on my side since Bella’s heart rate would frequently drop. She had a tiny airway, so this subsequently made sense. The epidural and Pitocin made me feel sick and lethargic. I would have to turn back to my right side after pushing when the time came. I had an odd, perplexed, and unexcited feeling. There seems to be a lot going on. Along with my parents, husband, midwife, and delivery nurse, the NICU was already in my room. We learned the baby was having trouble coming out after pushing for around 30 minutes. After being paged, my OB doctor arrived in the room among everyone else. Due to the curvature of my pelvis, I needed two persons to deliver Bella. Great.

Bella finally joined our world after a 12-hour labor. She was five and a half pounds when she came sunny side up. I observed a fairly little folded ear when she arrived. Since I had heard that newborn newborns have peculiar appearances, I didn’t pay it any attention. She was so little, so red, and so helpless. I was eager to meet our newborn girl and was prepared. I was grinning and looking forward to holding my newborn when I sensed something was wrong. Why aren’t there any congratulations for me? Why is my spouse feeling so uncertain and afraid? My mum won’t even look at me, why? My doctor left, but why? Why are so many more people entering my room? It was quiet in my room. Nobody made any noise. I was torn apart by the quiet; I was left broken and heartbroken. I started sobbing, trembling, afraid, perplexed, and lost. I’m in tears as I type this. I think back on these moments with sadness because I recall that my daughter’s birth was not commemorated.
Other experts entered and exited while taking notes. “What is happening? what went wrong with me? Why are so many people encroaching on our private moment?

When I finally caught a sight of Bella, she appeared to be “different.”

A remarkable event turned out to be unsettling. The space was utterly disorganized. What’s going on, my father yelled as he rushed in from behind the curtain. Things will be okay, but we don’t know much, my mum told my dad after gathering herself as much as she could.
“Mom, can I become pregnant again?”

These were the initial words that were said. I have no idea why. I have no idea why those particular words. Even the emotions I was experiencing at that time escape my memory. “Sweetheart, don’t worry about anything right now,” she murmured as she turned to face me. Everything will turn out for the best.

Bella needed to be taken to the NICU to be hooked up to IVs, and my husband would follow, the doctors informed us. I had yet to hold my child.

‘Wait!’ I said. I need to hold my child. Bella gave me a sweet look as they placed her on my chest. I’ll never forget the expression on his face that said, “Mommy, I’m terrified.” It was a glance that also made me feel at ease.
No matter what happens, she will always be protected, I said to her. I watched as my husband and infant left the room while my mother remained behind with me. Never before had I felt so void. Why us?

I was able to reconnect with my spouse and child around an hour later. You are required to press a button in the hospital where I gave birth after delivery to hear a lullaby. I was instructed to press the button as I was being brought to the NICU. I was unwilling to. I wasn’t having a party. I had no idea when or even if my infant would return home or be alright. I sobbed silently when the lullaby was playing. I’ll never make another preparation. I thought life had let us down. Nothing was important anymore. I became irate and enraged when texts from my girlfriends began to arrive. None of them received a response from me, and I even switched off my phone. I felt it was unjust. We had no idea what the future contained as they went home, cuddled their infants, and celebrated.

I was able to communicate with Bella and Erik at last. Erik and I were given our own space to connect with Bella on a skin-to-skin level.

My husband remarked, “Honey, I think I diagnosed our kid. There are two disorders, but one is worse than the other.” Let’s hope Treacher Collins is there. Together, we read the story, studied the images, did some research, and sobbed.
We were fortunate to have an ENT from Stanford accessible that evening. She examined Bella and determined that the two potential disorders existed. We talked about our alternatives and were told that the choice needed to be made the next day.

We had to bid our little child goodbye at midnight and return to our bed. It was quite difficult to leave her. I thought we had to keep her safe. I questioned whether she questioned our inability to accompany her. I questioned whether she felt unwelcome. I was torn apart internally as she leaned in near my breast but I was forbidden from nursing her. I was turning my child away. Bella desired closer ties with her mother, as well as more closeness and a sense of security. She also need food to satisfy her hunger. These were the things that I was unable to provide her.
After returning to our sentiments in our room, my husband and I chatted more, sobbed more, kissed one another goodbye, and then we disappeared into our separate thoughts.

The next day, things were a little bit more tranquil. Our parents both showed up early to be there for us. Between UCSF Children’s Benioff and Stanford Children’s, we had to make a significant choice. We felt it would be better to call my closest buddy who worked in the medical sector after taking that into consideration. Bella is present and in the NICU, “hi Noel.” Although our trip is different and she is a little different, I still need your assistance. Family and friends are everything. That’s all right, Liz. Don’t worry, I’ll be there immediately, and everything will be alright.
Within 20 minutes following my phone call, Noel arrived at our house. After going through our options, she summoned Kevin, a local surgeon, to help us make selections. Noel’s phone call gave us access to the top surgeons and medical professionals. I got a text from Carol, who oversees the Children’s craniofacial department, in less than an hour. Bella’s settlement had expanded and our trip had started.

We were transported to Children’s Benioff in Oakland on Saturday, October 27, 2018. As I entered Bella’s room, I noticed that she was covered with cables. She was so little and vulnerable. She probably questioned why her little body couldn’t be left alone. As she was being moved to the incubator, I sung to her. We informed her as we held her little hands that her parents would be just behind her.



When we got to the hospital, Bella’s medical adventure started.

When entering and leaving the NICU, we had to adhere to a certain process each time. Numerous doctors and neonatologists welcomed us.


Bella needed to undergo more testing, including x-rays, tests, and assessments. Bella had to be left at the hospital in the nights. Managing parenthood, a newborn, a rare condition, pumping, and the daily information presented was extremely difficult.

We entered Bella’s room when we at last arrived at our house, hugged each other, and started crying. We never anticipated returning home to an empty nest. I was allowed to get into the NICU webcams to view Bella when I would get up in the middle of the night to pump. Through media, I communicated with my daughter. My usual was like that.

After roughly a week, it was discovered that Bella had Treacher Collins syndrome, a rare genetic disorder that prevents the complete development of the facial bones. Ultrasound can only identify this condition 10% of the time and only when it is present at birth.
Bella was born with microtia, a hard cleft palate, a narrow airway, a small and sunken jaw, and hearing impairments. Bella underwent her first operation to have a g-tube as a result at just 7 pounds. Bella is fed via a stomach tube. Our stay in the NICU lasted eight weeks. Our home was the NICU. Bella was amused all day long by my parents, Erik’s parents, and ourselves. In addition to us, I was really fortunate to have one of my wonderful buddies who works as a nurse at the hospital keep an eye on Bella throughout her shifts, particularly in the evenings when I was already at home.

After receiving the necessary medical treatment and training to take care of Bella, we were released to return home on December 8, 2018. Along with being her parents, my husband and I also served as her nurses. We have had several whirlwinds, including multiple ER visits for emergencies and choking episodes at home.

We have come a long way—I mean, really, really far—since then. I’m grateful for the NICU training we received since it repeatedly allowed me to preserve my baby.
At the age of 16 months, Bella has undergone three significant inpatient procedures and one outpatient procedure. Most TCS infants get 20 to 60 procedures on average, if not more. Most of them have some form of hearing loss, however others have trachs to assist with breathing.

Bella attends early start with the school system, occupational therapy, speech therapy, and a music class for kids with hearing loss. Although our path and daily lives are different, I wouldn’t trade it for anything. I’ve learned a lot from this entire process as a mother, sister, wife, friend, and acquaintance.

Because life may be unpredictable, there are moments when we are not ready for change. Life is brittle, lovely, and occasionally gloomy. I’m happy to be able to provide Bella the necessities of life. Isabella has a wide network of supporters, including friends, family, customers, and online users. It has been simpler to get used to our routine now that everyone is on our path.



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