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!” Those words fill any parent’s heart with joy and excitement. Eliza and her husband experienced nine months of emotions, from the thrill of anticipation to the occasional worry. Luckily, Eliza had the support of her sister, sister-in-law, and friends who were also expecting. Having someone to share the ups and downs with made all the difference.
Throughout the pregnancy, Eliza learned that life sometimes throws unexpected curveballs. Despite being considered high risk due to a misdiagnosed heart-shaped uterus, the prenatal tests indicated everything was normal.
As the due date approached, the excitement grew. The nursery was prepared, and the entire family eagerly awaited the little one’s arrival. However, things didn’t go exactly as planned.
In the early hours of October 25, Bella made her grand entrance into the world. It was a whirlwind of chaos, with a room full of specialists expressing concerns about Bella’s health.
Amidst all the commotion, Eliza felt confused, scared, and lost. Instead of the celebration she had envisioned, there was silence and uncertainty.
As more specialists entered the room, Eliza couldn’t help but notice that Bella looked different. Her tiny folded ear caught her attention, although she wasn’t sure what it meant. The medical professionals continued their evaluations, and Eliza’s anxiety intensified. She finally got the chance to hold Bella briefly 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 joined 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, providing strength and resources to help them make informed decisions.
The NICU became their temporary home as Bella underwent numerous x-rays, exams, evaluations, and an 8-week stay. It was an emotional rollercoaster for Eliza and her family. Leaving Bella alone in the hospital every evening broke Eliza’s heart, and the overwhelming flow of information added to the challenges of being a new mother.
After a week, Bella’s diagnosis was confirmed as Treacher Collins Syndrome. This rare genetic condition affects the development of facial bones, resulting in microtia, hearing loss, a recessed jaw, a small airway, and a hard cleft palate.
Bella underwent her first surgery at just 7 pounds to receive a g-tube for feeding. While the journey in the NICU had its share of highs and lows, 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. As parents, Eliza and her husband not only embraced their role but also took 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 warrants multiple surgeries, and most individuals with the condition experience some degree of hearing loss.
Despite the obstacles, Bella participates in occupational therapy, speech therapy, and even attends a music class designed for children with hearing loss. Eliza has embraced her role as a mother, sister, wife, friend, and acquaintance, finding strength in her extraordinary journey.
Eliza’s journey with Bella has taught her invaluable lessons about the unpredictability and fragility life holds. She now understands the importance of treasuring each moment and being grateful for life’s blessings. Bella’s story has touched the hearts of friends, family, clients, and the incredible social media community, all of whom 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.
