Mom recounts her heartfelt experience raising a kid with Treacher Collins Syndrome.

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

Bella astonished her parents by arriving a few weeks early – but she also stunned them by appearing as one of the most valuable jewels available…

Eliza Bahneman granted Newsner permission to print this article.

“‘We’re expecting!'” When it comes to family planning, these are the words that everyone wants to hear. It took roughly 9 months for my husband and myself to become pregnant. I was becoming uncomfortable and nervous. It’s amazing how many emotions one might have while considering having children.

I was fortunate to be pregnant with my sister, sister-in-law, and a handful of girlfriends. We were all only a few weeks or months apart. It was wonderful to have someone with whom you could discuss the positives and downsides of your pregnancy.

Aside from the reality that a significant curveball can be thrown at any time throughout our trip, I have learnt a lot about life. We are sometimes ready for change, and sometimes we are not.

Like most couples, the anticipation of welcoming our bundle of joy grew as our due date approached. The room was wonderful and ready for our new arrival. Our family were ecstatic, and we couldn’t wait to see what we’d come up with. It was fascinating to observe the characteristics the newborns shared with each parent. I’d also heard numerous stories about how tough nursing can be. I was excited to have a relationship with my child, but I was also frightened about the changes that were to come.

I had a wonderful and simple pregnancy. I was deemed high risk owing to a heart-shaped uterus, which we subsequently discovered was not the case. I had an ultrasound every month, and because I had Bella when I was 35, I got all of the additional prenatal tests.

Everything returned to ‘normal.’

My husband was working late on the evening of October 24th, and I was putting the last touches on Bella’s nursery and diaper bag. I sent a photo of my tummy and a letter from Bella to her papa right before I went to bed at 11:30. ‘Hi, Daddy, Mommy believes I’m going to come early. She gets a hunch she won’t be pregnant for much longer. I’m excited to meet you. ‘I adore you, Daddy.’

My water broke on October 25, 2018, at 1:15 a.m. Bella was due to arrive a month early. I was terrified since we hadn’t taken any lessons (which I subsequently discovered you don’t actually need). My suitcase was half-full, our car seat hadn’t yet been fitted, and my nails and hair were a shambles. Not the way I expected to go into labor. We ended up phoning my parents and rushing to the hospital together. The excitement of labor began!

Throughout my labor, I had to lie side prone on my right because Bella’s heart rate would drop dramatically. (Due to her tiny airway, this made sense afterward.) The epidural and Pitocin made me nauseated and tired. When it was time to push, I would push and then turn around to my right side. I felt strange, puzzled, and uninterested. There appeared to be a lot going on. My room already had the NICU, as well as my mother, husband, midwife, and delivery nurse. We were told after approximately 30 minutes of pushing that the baby was having difficulty coming out. My OB doctor was summoned, and he, like everyone else, entered the room. Due to the curvature of my pelvis, I had to have Bella delivered by two people. Great.

Bella arrived in our world after 12 hours of hard work. She was 5 and a half pounds and arrived sunny side up. When she arrived, I observed a very little folded ear. I had been informed that newborns appear strange as soon as they are born, so I didn’t think much of it. She seemed very little, red, and frail. I was ecstatic and eager to meet our newborn girl! I was delighted and impatiently awaiting the opportunity to embrace my daughter when I sensed something was wrong. ‘How come no one is congratulating me? Why is my spouse so perplexed and terrified? Why isn’t my mother looking at me? Why did my doctor leave? ‘Why are there so many people in my room?’ My chamber was deafeningly quiet. Nobody said anything. The stillness devastated my heart and tore me apart. I was shivering, afraid, puzzled, and lost when I broke down. Writing about this moment tears my heart. I relive these memories with a sorrowful heart, remembering how my daughter’s birth was not recognized.

Other specialists came in and out, taking notes. ‘What exactly is going on? What went wrong with me? ‘Why are all these people intruding on our great occasion?’

I eventually caught a peek of Bella, and she appeared to be ‘strange.’

An encounter that was intended to be unique was terrifying. The room was silently tumultuous. ‘What is happening?’ my father yelled from behind the curtain. My mother had gathered as much as she could and told my father, ‘Things will be well, but we don’t know much.’

‘Can I have children again, Mom?’

These were the first words that sprang to mind. I’m not sure why. I’m not sure why those precise terms were chosen. I can’t even recall how I felt at the time. ‘Sweetheart, don’t worry about anything right now,’ she urged to me. ‘Everything will work out.’

The doctors advised us that Bella needed to be sent to the NICU to be hooked up to IVs, and that my husband would follow. I had yet to hold my kid.

‘Wait!’ I said. ‘I’d like to hold my baby.’ They placed Bella on my chest, and she peered into my eyes lovingly. I will never forget that face, which screamed, ‘Mommy, I am afraid.’ It was also a sight that made me feel at ease.

I told her that no matter what happened, she would always be safe. My mother stayed with me as my husband and baby left the room. I’d never felt so depleted. Why us?

I was reunited with my spouse and kid about an hour later. They make you hit a button that plays a lullaby after delivery in the hospital where I gave birth. I was instructed to hit the button as I was being brought to the NICU. I didn’t want to do it. I wasn’t having a party. I didn’t know whether my kid would ever return home or if she’d be okay. I sobbed within when the lullaby played. I’ll never plan anything else again. Life had let us down, I felt. Nothing was important anymore. As texts from my girlfriends began to arrive, I became enraged and indignant. I didn’t answer to any of them and even switched off my phone. I believed that was unjust. They got to go home, cuddle their kids, and celebrate, while we had no idea what our future contained.

I was eventually able to contact Bella and Erik. Erik and I were granted solitude so that we could bond with Bella skin to skin.

‘Honey, I think I diagnosed our kid,’ my husband remarked. ‘There are two disorders, but one is worse than the other. Hopefully, it’s Treacher Collins.’ We read the story, looked at images, investigated, and grieved together.

We were fortunate to have an ENT from Standford accessible that evening. She examined Bella and determined that she had one of the two probable disorders. We examined our alternatives and were told that a decision had to be made the next day.

We had to say goodnight to our child around midnight in order to return to our room. It was quite difficult to move away from her. I felt compelled to defend her. I wondered whether she was perplexed as to why we couldn’t be with her. I was curious whether she felt unwelcome. It tore me up inside when she was rooting for my breast and I wasn’t permitted to nurse her. I was abandoning my child. Bella desired closer contact with Mommy, tenderness, and security; she was hungry and desired to be fed. These were the things I was unable to offer for her.

My husband and I returned to our feelings in our room, spoke a little more, wept a lot more, kissed goodnight, and disappeared into our separate thoughts.

The next day, things were a little calmer. Our parents both arrived early to be at our sides. We had to choose between two hospitals: UCSF Children’s Benioff and Stanford Children’s. With that in mind, we decided to contact my closest buddy who works in the medical industry. ‘Hello Noel, Bella has arrived and is in the NICU. She’s unique, and our paths are diverging, yet I need your assistance.’ Family and friends are everything. ‘It’s all right, Liz. Don’t worry, I’ll be right there, and everything will be OK.’

Noel arrived at our location within 20 minutes after my phone call. After we discussed our possibilities, she phoned Kevin, a surgeon in our region, to help us make our decisions. Noel’s phone call put us in touch with the greatest doctors and surgeons. Within an hour, I received a text from Carol, the head of the craniofacial department at Children’s. Our trip had begun, and Bella’s town was expanding.

We were transported to Children’s Benioff in Oakland on Saturday, October 27, 2018. I entered Bella’s room and noticed all of these cables all over her. She was so frail and little. I’m sure she was perplexed as to why her tiny body couldn’t be left alone. As she was being taken to the incubator, I sung to her. We took her small hands in ours and assured her that Mommy and Daddy would be right behind her.

Bella’s medical ordeal began the moment we arrived at the hospital.

We had to follow a unique routine every time we entered and exited the NICU. Several doctors and neonatologists met us.

Bella needed to be evaluated further, which included x-rays, tests, and assessments. We had to leave Bella at the hospital in the nights. It was really difficult to balance parenthood, a newborn, a rare condition, pumping, and the daily information presented.

When we came home, we went into Bella’s room, hugged each other, and wept. We had no idea we’d come home to an empty nest. I would wake up in the middle of the night to pump and was able to view Bella on the NICU cams. I communicated with my daughter via media. That was my usual.

After approximately a week, it was established that Bella’s disease was Treacher Collins, a rare genetic illness that impairs the full development of the facial bones. This condition is only present at birth, and ultrasonography can only identify it 10% of the time.

Bella was born with microtia, a hard cleft palate, a tiny and recessed jaw, a small airway, and a small airway. As a result, Bella underwent her first operation to acquire a g-tube when she was just 7 pounds. Bella is fed through a stomach tube. Our stay in the NICU lasted 8 weeks. We lived in the NICU. Bella was kept occupied throughout the day 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, check on Bella during her shifts, especially in the nights when I was already at home.

We were released to go home on December 8, 2018, after being medically and thoroughly educated to care for Bella. We were not only her parents, but also her nurses. We’ve been through a lot, including multiple emergency visits to the ER and choking incidents at home.

We’ve come a long way, and I mean very far. I’m grateful for the NICU training we received since it helped me save my kid multiple times.

Bella is now 16 months old and has undergone three major inpatient procedures as well as one outpatient procedure. Most TCS newborns have between 20 and 60 operations, if not more. Some have trachs to help them breathe, but nearly all of them have hearing loss.

Bella attends occupational therapy, speech therapy, a music class for children with hearing loss, and the school district’s early start program. Our path is different, as is our usual, but I wouldn’t trade it for anything. As a mother, sister, wife, friend, and acquaintance, this entire event has taught me so much.

Life is unexpected, and we are not always prepared for it. Life is delicate, lovely, and gloomy at times. I am thankful to be able to provide Bella with the necessities of life. Isabella has a large network of supporters, including friends, family, clients, and social media. It has been simpler to acclimate to our new normal with everyone on our trip.”

Thank you for sharing your experience! Bella is lovely and unique, as are you and your spouse. Keep your head up for your girl.

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