Little Bella’s arrival on October 25, 2018, brought immeasurable joy and unexpected challenges to the lives of Eliza Bahneman and her husband. Born a few weeks earlier than anticipated, Bella also came into the world with a rare genetic condition known as Treacher Collins Syndrome. Eliza invites us to join her on a heartfelt journey of raising her extraordinary daughter.
A Joyful Anticipation
The news of expecting a baby is a moment filled with joy and excitement for any parent. Eliza and her husband experienced a whirlwind of emotions during the nine months of pregnancy, balancing anticipation with occasional worries. Thankfully, Eliza had the support of her sister, sister-in-law, and friends who were also expecting, which made navigating the ups and downs much easier.
As the due date approached, the family eagerly prepared the nursery and looked forward to welcoming their little one. However, life had other plans, and the journey to Bella’s birth was far from straightforward.
A Whirlwind Arrival
In the early hours of October 25, Bella made her grand entrance into the world. The delivery room quickly filled with specialists expressing concerns about her health. Instead of the celebration Eliza had envisioned, confusion and fear overwhelmed her as she sensed something was not right.
Bella’s unique appearance caught Eliza’s attention, particularly her tiny folded ear. As medical professionals evaluated Bella, Eliza’s anxiety intensified. After a brief moment of holding Bella, she was taken to the Neonatal Intensive Care Unit (NICU) for further assessments.
Building a Support Network
During this challenging time, Eliza and her husband found solace in the support of family and friends, as well as the medical experts who guided them. They connected with trusted friends in the medical field, leading them to top doctors and surgeons. With each passing day, Bella’s support network expanded, offering strength and resources to help the family make informed decisions.
The NICU became their temporary home, filled with the sounds of machines and the anxiety of uncertainty. Bella underwent countless x-rays, exams, and evaluations during her eight-week stay. Leaving her alone in the hospital each evening broke Eliza’s heart, and the flood of medical information was overwhelming for a new mother.
A Confirmed Diagnosis
After a week of testing, Bella was diagnosed with Treacher Collins Syndrome, a rare genetic condition that affects facial bone development. This condition can lead to 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.
Despite the emotional rollercoaster of the NICU, Eliza and her husband remained determined to provide the best care for Bella. They drew strength from each other and the support of their growing community.
Embracing Parenthood
On December 8, 2018, Bella was finally discharged from the hospital. As new parents, Eliza and her husband embraced their roles and 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 prepared them to handle the challenges ahead.
At just 16 months old, Bella had already undergone major surgeries and continued pursuing therapies to aid her development. Treacher Collins Syndrome requires multiple surgeries, and most individuals with the condition experience some degree of hearing loss.
A Journey of Growth and Resilience
Despite the obstacles, Bella participates in occupational therapy, speech therapy, and even a music class designed for children with hearing loss. Eliza has fully embraced her multifaceted role as a mother, sister, wife, friend, and advocate. Throughout this journey, she has discovered the importance of treasuring every moment and being grateful for life’s blessings.
Bella’s story has touched the hearts of friends, family, and the wider social media community, all of whom offer unwavering support. Eliza’s journey with Bella has taught her invaluable lessons about life’s unpredictability and fragility.
Gratitude and Hope
To Eliza Bahneman and her family, we extend our heartfelt gratitude for sharing your inspiring story. Bella is a beautiful and special child, fortunate to have such resilient and loving parents. As you continue this journey, may it be filled with love, joy, and the strength to overcome every challenge that comes your way.
