A Mother’s Journey: The Unforgettable Story of Raising a Daughter with Treacher Collins Syndrome
Little Bella’s arrival on October 25, 2018, brought immeasurable joy and unexpected twists to the lives of Eliza Bahneman and her husband. Bella came into the world a few weeks earlier than expected, and with her came a rare genetic condition known as Treacher Collins Syndrome. Today, we invite you to join Eliza on her heartfelt journey of raising her extraordinary daughter.
“We’re going to have a baby!” These words bring immense joy and excitement to any parent’s heart. Eliza and her husband went through nine months of various emotions, ranging from the thrill of anticipation to occasional worry. Fortunately, Eliza had the support of her sister, sister-in-law, and friends who were also expecting. Sharing the journey with others made a significant difference.
During her pregnancy, Eliza discovered that life can sometimes throw unexpected curveballs. Despite being classified as high risk due to a misdiagnosed heart-shaped uterus, her prenatal tests consistently showed normal results.
As the due date approached, the excitement in the household grew. The nursery was ready, and the entire family eagerly anticipated the baby’s arrival. However, things didn’t go exactly as planned.
As more specialists entered the room, Eliza couldn’t help but notice that Bella looked different. Her tiny folded ear caught her attention, though she wasn’t sure what it meant. As the medical professionals continued their evaluations, Eliza’s anxiety intensified. She finally had a brief moment to hold Bella before she was whisked away to the Neonatal Intensive Care Unit (NICU) for further assessments.
Eliza and her husband found solace in the support of loved ones and medical experts who stood by them on their journey. They reached out to friends in the medical field who connected them with top doctors and surgeons. With each passing day, Bella’s support network grew, offering strength and resources to help them make informed decisions.
After a week, Bella was diagnosed with Treacher Collins Syndrome, a rare genetic condition that affects the development of facial bones. This condition resulted in microtia, hearing loss, a recessed jaw, a small airway, and a hard cleft palate.
At just 7 pounds, Bella underwent her first surgery to receive a g-tube for feeding. The journey in the NICU was filled with highs and lows, but Eliza and her husband remained determined to provide the best possible care for their daughter.
On December 8, 2018, Bella was finally discharged from the hospital. Eliza and her husband embraced their roles as parents, taking on additional responsibilities, including nursing care. They faced several emergency visits to the ER and choking incidents at home. This new phase of life demanded constant vigilance, but the training they received in the NICU equipped them to navigate these challenges.
At just 16 months old, Bella has already undergone major surgeries and continues to pursue therapies for her development. Treacher Collins Syndrome often requires multiple surgeries, and many individuals with the condition experience varying degrees of hearing loss.
Despite the obstacles, Bella participates in occupational therapy, speech therapy, and even attends a music class tailored for children with hearing loss. Eliza has embraced her roles as a mother, sister, wife, friend, and advocate, finding strength in her extraordinary journey.
Eliza’s journey with Bella has taught her invaluable lessons about life’s unpredictability and fragility. She now cherishes each moment and is grateful for life’s blessings. Bella’s story has deeply touched the hearts of friends, family, clients, and the supportive social media community, all of whom continue to provide unwavering support.
To Eliza Bahneman and her family, we extend our deepest gratitude. Thank you for sharing your inspiring story. Bella is a beautiful and special child, and she is fortunate to have such resilient and loving parents. Stay strong, and may your journey continue to be filled with love and joy.
