Eliza Bahneman, a mom of a girl with Treacher Collins Syndrome, shared her family’s journey and spoke of the joys and challenges of being a parent of a child with this syndrome.
It was in early 2018 when this brave woman learned she was expecting a baby. She and her husband, Erik, were overjoyed and couldn’t wait to meet their bundle of joy.
Eliza was even more excited because her sister, her sister-in-law, and a few of her friends were also pregnant around the same time. She felt like she wasn’t alone on this extraordinary journey that would end with her receiving the title she was longing for, that of a MOTHER.
The pregnancy was normal, but Eliza somehow felt that her girl would arrive sooner than expected, and she was right. In the eighth month of her pregnancy, her water broke and she was rushed to the hospital.
Eliza gave birth, and as the nurses took the baby, she noticed the little one’s ear was folded. But she knew newborns looked weird as soon as they come out so she didn’t think anything of it.
However, Eliza knew something was out of the ordinary when no one congratulated her on her new baby.
Instead, of the anticipated celebration, there was an unsettling silence. Baby Bella was quickly taken to the Neonatal Intensive Care Unit (NICU) for further evaluation, leaving Eliza and her husband feeling confused and scared.
“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?” she asked herself.
The NICU became Bella’s temporary home for 8 weeks, during which she underwent many tests and evaluations. Each day brought a torrent of information and emotions for Eliza and her family. A week into her stay, Bella was diagnosed with Treacher Collins Syndrome, a condition that affects the development of facial bones and leads to microtia, hearing loss, a recessed jaw, a small airway, and a hard cleft palate.
“My husband and I had never heard of Treacher-Collins before, so it was certainly a learning journey for us,” Eliza said.
“We felt confused and questioned everything. Was it something we did or did not do? How can something like this happen? Why us and our baby girl?”
Sharing her story, this mom wrote, “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.”
Two days after her birth, Bella was transferred to Children’s Benioff in Oakland.
There were wires all around her and she looked tiny and fragile, but her mommy and daddy were there to provide her with the love and strength she needed in order to thrive.
“I knew my motherhood journey was going to be different. But I knew my baby deserved to be celebrated,” Eliza said.
“I was ready to talk about her, answer questions and raise awareness about her condition.”
Because of her condition, Bella went into her first surgery to receive a g-tube at only 7 pounds.
When they were properly trained to take care of a baby with Treacher Collins Syndrome, Eliza and Erik were able to take their baby 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.”
At the tender age of 16 months, Bella had already undergone significant surgeries and engaged in various therapies aimed at supporting her development. She actively participated in occupational therapy, speech therapy, and a specialized music class tailored for children with hearing loss, illustrating her remarkable resilience and determination.
“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,” her mom wrote.
Eliza wants to raise awareness about Treacher Collins Syndrome and encourage people to show kindness to those with a visible difference.
