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

When little Bella was born in October 25, 2018 , Eliza Bahneman and her husband’s lives changed forever.


Bella surprised her parents by arriving a few weeks early – but she also surprised them showing up as one of most rare gems you can find…

“‘We’re pregnant!’ These are the words everyone likes to hear when planning for a family. It took my husband and I about 9 months to get pregnant. I was starting to feel anxious and nervous. It’s crazy how many emotions one can feel when planning to have children.

I was lucky to have shared my pregnancy with my sister, sister-in-law, and a couple of girlfriends. We were all within weeks or months of each other. It was amazing to have someone you can share your pregnancy pros and cons with.


Throughout our journey, I have learned many things about life, aside from the fact a major curveball can be thrown at any given day. Sometimes we are prepared for change and at times we are not.

Just like most couples, the excitement of bringing our bundle of joy starting kicking in as we got closer to our due date. The room was perfect and ready to welcome our little one. Our families were excited and we were anxious to see what we had created. It was so fun seeing what traits the babies shared with each parent. I had also heard many stories about breastfeeding and how difficult it can be. I was looking forward to sharing a bond with my child but also nervous about the changes to come.

I had an amazing and easy pregnancy. I was considered high risk due to a heart-shaped uterus, which later we found out was not the case. I had an ultrasound monthly and because I was delivering Bella when I was 35, I had all the other prenatal testings.

Everything came back ‘normal.’

On the evening of October 24th, my husband was working late and I was preparing the final touches to Bella’s room and diaper bag. Right before I went to bed at 11:30, I texted a picture of my belly and a note from Bella to her daddy. ‘Hi, Daddy, Mommy thinks I’m going to come early. She has this feeling she’s not going to be pregnant much longer. I can’t wait to meet you. Love you, Daddy.’

On October 25, 2018, at 1:15 a.m., my water broke. Bella was arriving a month early. I was frantic, as we hadn’t taken any classes (which later I learned you really don’t need). My bag was half packed, our car seat not yet installed, and my nails and hair were a mess. Not the way I pictured I would go into labor. We ended up calling my parents and together rushed to the hospital. The fun of labor began!

Throughout my labor, I had to be side prone on my right, as Bella’s heart rate would drastically decrease. (This later made sense, due to her small airway.) I was nauseous and sleepy from the epidural and Pitocin. When it came time to push, I would push and then have to turn back to my right side. I felt weird, confused, and not excited. It seemed like there was a lot happening. The NICU was already in my room, along with my mom, husband, midwife, and delivery nurse. After pushing for about 30 minutes, we were informed the baby was having a hard time coming out. My OB doctor was paged and along with everyone else, now he was in the room as well. I had to have two people delivering Bella due to the shape of my pelvis. Great.

After 12 hours of labor, Bella entered our world. She arrived sunny side up, weighing 5 and a half pounds. Upon her arrival, I noticed a really small folded ear. I was told babies look weird as soon as they come out so I didn’t think anything of it. She was so tiny, red, and vulnerable. I was excited and ready to meet our baby girl! I was smiling and anxiously waiting to hold my baby when I realized something was not right. ‘Why is n’t anynoe congratulating me? Why is my husband so confused and scared? Why can’t my mom look at me? Why did my doctor step out? Why are all these other people coming into my room?’ My room was silent. No one said a word. The silence tore me apart, it broke me, shattered my heart. I broke down, shaking, scared, confused, and lost. Writing this moment breaks me. With a heavy heart, I revisit these memories and remember my daughter’s arrival was not celebrated.

Other specialists walked in and out writing down notes. ‘What is going on? What did I do wrong? Why are all these people invading our special moment?’

I finally got a glimpse of Bella and… she looked ‘different.’

An experience which is supposed to be special, was scary. The room was silently chaotic. My father ran in (still behind the curtain) yelling, ‘What is happening?’ My mom had gathered herself as much as she could and informed my dad, ‘Things will be okay but we don’t know much.’

‘Mom, can I have kids again?’

These were the first words to come out. I don’t know why. I don’t know why those specific words. I don’t even remember what I was feeling at that moment. She looked at me and said, ‘Sweetheart, don’t think about anything right now. Everything is going to work out.’

The doctors informed us Bella had to be rushed to the NICU to be attached to IVs and my husband would follow. I still hadn’t held my baby.

‘Wait!’ I said. ‘I want to hold my baby.’ They put Bella on my chest and she looked so softly into my eyes. I will never forget that look, a look that said, ‘Mommy I am scared.’ It was also a look that brought comfort to me.

I whispered to her no matter what happens she will always be protected. My mom stayed back with me and I watched my husband and baby leave the room. I had never felt so empty. Why us?

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