A Mother’s Journey: Raising a Daughter with Treacher Collins Syndrome
A Surprising Arrival
When little Bella was born on October 25, 2018, she brought immense joy and an unexpected twist to the lives of Eliza Bahneman and her husband. Bella arrived a few weeks early, but that wasn’t the only surprise – she was also born with a rare genetic condition called Treacher Collins Syndrome. Today, we share Eliza’s touching story of raising her remarkable daughter.
Pregnancy Journey and Unexpected Changes
“We’re pregnant!” Those words bring so much happiness when planning for a family. Eliza and her husband went through nine months of emotions, from excitement to anxiety. Fortunately, Eliza had the support of her sister, sister-in-law, and friends who were also experiencing the journey of pregnancy. It was comforting to have someone to share the pros and cons with.
Throughout the pregnancy, Eliza learned that life can throw unexpected curveballs. Despite being high risk due to a heart-shaped uterus (which turned out to be a misdiagnosis), everything seemed normal during the prenatal tests.
The due date was approaching, and anticipation grew as the nursery was prepared and family members eagerly awaited the arrival of the little one. But things didn’t go exactly as planned.
A Chaotic Arrival
In the early hours of October 25, Bella made her entrance into the world. It was a rush of chaos, with a room full of specialists and concerns about Bella’s health.
Eliza felt confused, scared, and lost amidst all the commotion. She longed for the celebration she had imagined but instead faced silence and uncertainty.
Embracing the Journey
As more specialists entered the room, Eliza noticed that Bella looked different. Her tiny folded ear caught her attention, but she wasn’t sure what it meant. The medical professionals continued their evaluations, and Eliza’s anxiety grew. She finally got to hold Bella briefly before she was whisked away to the Neonatal Intensive Care Unit (NICU) for further assessments.
Building a Village of Support
Eliza and her husband found comfort in the support of their loved ones and medical experts who joined 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 village grew, providing them with strength and resources to make informed decisions.
Challenging Days in the NICU
The NICU became their temporary home as Bella underwent x-rays, exams, evaluations, and an 8-week stay. It was a rollercoaster of emotions for Eliza and her family. Leaving Bella alone in the hospital every evening was heartbreaking, and the daily information overload added to the challenges of motherhood.
Embracing Bella’s Diagnosis
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 went through her first surgery at just 7 pounds to receive a g-tube for feeding. The NICU journey was filled with highs and lows, but Eliza and her husband were determined to provide the best care for their daughter.
Home at Last
On December 8, 2018, Bella was finally discharged from the hospital. As her parents, Eliza and her husband not only embraced their role but also took on the additional responsibilities of nursing. They faced several emergency visits to the ER and choking incidents at home. This new phase of life required constant vigilance, but their training in the NICU helped them navigate the challenges.
An Ongoing Journey of Love and Care
At 16 months old, Bella has already undergone major surgeries and continues to pursue therapies for her development. Treacher Collins Syndrome requires 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 a music class for children with hearing loss. Eliza has embraced her role as a mother, sister, wife, friend, and acquaintance, finding strength in her journey.
Cherishing Life’s Gifts
Eliza’s journey with Bella has taught her valuable lessons about the unpredictability and fragility of life. She recognizes 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 social media community, who provide constant support.
To Eliza Bahneman and her family, thank you for sharing your inspiring story. Bella is a beautiful and special child, and she is fortunate to have such strong and loving parents. Stay strong, and may your journey continue to be filled with love and joy.
