Eliza Bahneman’s touching story as the mother of a child with Treacher Collins Syndrome is one of resilience, hope, and love. Her journey through the joys and challenges of raising her daughter has been both enlightening and inspiring.
Back in early 2018, Eliza discovered the wonderful news that she was pregnant. The joy she and her husband, Erik, felt was indescribable as they eagerly anticipated meeting their little angel.
Eliza’s excitement was heightened by the fact that she shared this phase of life with her sister, sister-in-law, and some friends, who were also expecting. This shared experience made her feel like she was part of an extraordinary journey, giving her a sense of camaraderie and a title she had longed for—a MOTHER.
Despite experiencing a normal pregnancy, Eliza had a strong feeling that her daughter would arrive earlier than expected, something she was right about. At eight months pregnant, her water unexpectedly broke, and she quickly found herself at the hospital.
After delivering her child, Eliza noticed her baby’s ear was folded. At first, she brushed it off, knowing how unique newborn appearances can be.
The Unusually Quiet Celebration of New Life
Contrary to the anticipated celebration, an unsettling silence filled the room post-birth. Baby Bella was whisked away to the Neonatal Intensive Care Unit (NICU), leaving Eliza and Erik in a cloud of confusion and concern.
Overwhelmed with questions, Eliza sought to understand why there were no congratulations, why her husband seemed frightened, why her mother avoided eye contact, and why her doctor was absent.
Bella remained in the NICU for 8 challenging weeks, undergoing various tests. It was during this time that her parents learned Bella had Treacher Collins Syndrome—a condition affecting the development of facial bones, causing issues like microtia, hearing loss, and a small airway.
Eliza and Erik were thrust into a whirlwind of emotions, questioning how and why this had happened to their cherished daughter.
Reflecting on those early days, Eliza shared, “Leaving Bella in the NICU each night was heart-wrenching. It was as if I was rejecting my own child, unable to provide her with the simple comforts she sought, such as breastfeeding or the warmth of my arms.”
A Journey of Growth and Strength
Just two days after Bella’s birth, she was moved to Children’s Benioff in Oakland. Surrounded by wires and machines, she seemed so small and fragile. Yet, Eliza and Erik remained by her side, determined to provide her with the love and support she needed to overcome.
“I understood early on that my path as a mother would be different,” Eliza explained. “But I was prepared to celebrate Bella’s life and use our experience to educate and raise awareness about her condition.”
A Complex Medical Start
Weighing just 7 pounds, Bella underwent her first surgery to receive a g-tube, marking the start of her medical journey. Once Eliza and Erik were trained to care for a baby with Treacher Collins Syndrome, they finally brought Bella home.
As Eliza described, “We weren’t just parents; we were her caregivers, her nurses, always ready for an emergency.” With multiple ER visits and choking scares, each day required vigilance.
Through it all, Eliza’s gratitude for the NICU training was immense, as it equipped her to handle these challenges and save Bella’s life on more than one occasion.
Even by the age of just 16 months, Bella had already faced numerous surgeries and therapies. Her therapy regime included occupational therapy, speech therapy, and music sessions tailored for children with hearing impairments—demonstrating Bella’s inspiring resilience and zest for life.
“Life can be unpredictable and fragile, yet astonishingly beautiful,” Eliza reflected. “I’m thankful for the vast support network around us, which includes friends, family, and even social media. This unity has made embracing our new normal much easier.”
Eliza aspires to bring greater awareness to Treacher Collins Syndrome, encouraging everyone to be kind and understanding toward those with visible differences.
Love and peace to everyone.
