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…
This story is published by Newsner with permission from Eliza Bahneman.
“‘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?
About an hour later, I was able to reunite with my husband and baby. At the hospital where I gave birth, they have you push a button which plays lullaby post-delivery. As I was being wheeled to the NICU, I was asked to push the button. I didn’t want to. I wasn’t celebrating. I didn’t even know if my baby would ever come home or if she would ever be okay. As the lullaby played, I cried internally. I will never plan for anything again. I felt like life let us down. Nothing mattered anymore. As messages started coming in from my girlfriends, I started to get mad and angry. I didn’t respond back to any of them and in fact, I turned off my phone. It was unfair, I thought. They got to go home, they held their babies, they celebrated and we didn’t even know what our future holds.
I finally was able to connect with Bella and Erik. We were given privacy so Erik and I could bond with Bella, skin to skin.
‘Honey, I think I diagnosed our daughter,’ my husband said, ‘Well, there are two syndromes, however, one is worse than the other. Let’s hope it’s Treacher Collins.’ We read the article together, looked at pictures, researched, and cried.
We were lucky to have an ENT available from Standford that evening. She evaluated Bella and confirmed the two possible syndromes. We discussed options and were informed a decision had to be made the following day.
At midnight, we had to say goodnight to our little one to head back to our room. It was so hard to walk away from her. I felt like we had to protect her. I wondered if she wondered why we couldn’t be with her. I wondered if she felt unwanted. When she was rooting towards my breast and I was not allowed to breastfeed her, it tore me apart inside. I was rejecting my child. Bella wanted to connect more with Mommy, she wanted intimacy, wanted to feel safe; she was hungry and wanted to be fed. These were the things I could not provide her.
Once in our room, my husband and I circled back to our feelings, talked a bit more, cried a lot more, kissed goodnight, and went into our own thoughts.
Things were a bit calmer the following day. Both our parents arrived early to be by our side. We had a major decision to make between two hospitals: UCSF Children’s Benioff or Standford Children’s. With that in mind, we decided it would be best to call my best friend who was in the medical field. ‘Hi Noel, Bella is here and she’s in the NICU. She’s a little different and our journey is different but I need your help.’ Friends and family are everything. ‘That’s okay, Liz. I’ll be right there and don’t worry, everything is going to be fine.’
Noel got to us within 20 minutes of my phone call. After discussing our options, she called Kevin who is a surgeon in our area to assist us with our decisions. The call that Noel made provided us connections to the best doctors and surgeons. Not even an hour went by and I received a text from Carol, who runs the craniofacial department at Children’s. Our journey had begun and Bella’s village grew.
On Saturday, October 27, 2018, we were transferred to Children’s Benioff in Oakland. I walked to Bella’s room and saw all these wires all over her. She was so tiny and fragile. I’m sure she wondered why her little body couldn’t be left alone. I sang to her as she was being transferred to the incubator. We held her tiny hands and told her Mommy and Daddy will be right behind her.
As soon as we arrived at the hospital, Bella’s medical journey began.
We had a special protocol to follow each time going in and out of the NICU. We were greeted by several specialists and neonatologists.
Bella had to be assessed further with x-rays, exams, and evaluations. We had to leave Bella in the evenings at the hospital. It was so hard to manage motherhood, a new baby, a rare syndrome, pumping, and the daily information provided.
When we finally got home, we walked into Bella’s room, held each other and cried. We never knew we would come home to an empty nest. I would wake up in the middle of the night to pump and was able to log into the NICU cameras to watch Bella. I connected with my daughter through media. That was my normal.
After about a week, Bella’s syndrome was determined to be Treacher Collins, a rare genetic condition which affects the full development of the facial bones. This syndrome is only present at birth and only 10% of the time can it be detected via ultrasound.
Bella was born with microtia, hearing loss, small and recessed jaw, a small airway, and a hard cleft palate. Because of this, Bella went into her first surgery to receive a g-tube at only 7 pounds. A gastric tube is a way Bella is fed. Our journey in the NICU was 8 weeks long. The NICU was our home. Between my parents, Erik’s parents, and ourselves, Bella was entertained throughout the day. In addition to us, I was really lucky to have one of my amazing girlfriends who is a nurse at the hospital check on Bella throughout her shifts, especially in the evenings when I was already home.
On December 8, 2018, after we were medically and properly trained to care for Bella, we were discharged to go home. My husband and I were not only her parents but also her nurse. We have had many whirlwinds, including several emergency visits to the ER and choking situations while at home.
We have come a long way, and I mean a really long way. I’m thankful for the training we received in the NICU, as it helped me save my daughter several times.
Bella is now 16 months old and has had three major inpatient surgeries and one outpatient surgery. Most TCS babies have an average of 20 to 60 surgeries, if not more. Some have trachs to help them breathe but almost all of them have some sort of hearing loss.
Bella goes to occupational therapy, speech therapy, a music class for children with hearing loss, and early start with the school district. Our journey is different, our normal is different, but I wouldn’t change it for anything. This entire experience has taught me so much as a mother, sister, wife, friend, and acquaintance.
Life is unpredictable and sometimes, we are not prepared for change. Life is fragile, beautiful, and at times, dark. I am grateful to be able to provide Bella with life’s essentials. Isabella has a huge support system, from friends, family, clients, and social media. With everyone on our journey, it has been easier to adjust to our normal.”
Thank you for sharing your story! Bella is beautiful and special and so are you and your husband. Stay strong for your girl. 💕