Mom shares touching story of raising a daughter with Treacher Collins Syndrome

Little Bella’s arrival on October 25, 2018, was a surprise for Eliza Bahneman and her husband. Bella came into the world a few weeks early, and she also came with a rare condition called Treacher Collins Syndrome. In this heartwarming story, Eliza shares her journey of raising a daughter with this syndrome and the lessons she has learned along the way.

A Journey of Unexpected Change

Eliza begins her story by reflecting on the mix of emotions she experienced when she and her husband discovered they were expecting. The excitement of starting a family was accompanied by anxiety and nervousness. Eliza was fortunate to have her sister, sister-in-law, and a few close friends going through pregnancy at the same time. They formed a support system where they could share both the joys and challenges of pregnancy.

As the due date approached, Eliza and her husband eagerly prepared for the arrival of their little one. However, Bella’s early arrival caught them off guard. Despite the initial chaos of not being fully prepared, Eliza held onto the excitement of becoming parents. Little did she know that Bella’s arrival would be different from what she had imagined.

A Silent Chaotic Moment

When Bella was born, Eliza noticed that something was not quite right. The room fell into silence, and confusion filled the air. Specialists came in and out, writing notes and assessing Bella. Eliza couldn’t understand why their special moment was being invaded by so many people. And then she saw her daughter for the first time. Bella looked “different.”

Eliza’s heart broke as she realized that Bella’s birth was not being celebrated like the births of other children. Questions flooded her mind, and she wondered why life had dealt them this unexpected hand. Amidst the uncertainty, Eliza found solace in the loving words of her mother, assuring her that everything would be alright.

A Journey of Support and Connection

Bella was swiftly taken to the NICU for further evaluation and care. The separation from her baby was excruciating for Eliza, and she couldn’t help but feel empty and rejected. However, through the support of friends and family, connections were made to the best doctors and surgeons. Bella’s village began to grow.

The decision was made to transfer Bella to UCSF Children’s Benioff in Oakland. As Eliza watched her tiny daughter being surrounded by wires in her new hospital room, she couldn’t help but feel helpless. But in those tender moments, Eliza sang to Bella, letting her know that Mommy and Daddy would always be there for her.

Embracing a New Normal

Bella’s medical journey officially began at UCSF. The days were filled with assessments, evaluations, and visits from specialists. The NICU became their temporary home, where their families provided endless support and love. Bella’s syndrome was diagnosed as Treacher Collins, a rare genetic condition affecting facial bone development. With this diagnosis came the realization that Bella would face multiple surgeries and challenges throughout her life.

Eliza and her husband embraced their role as not only Bella’s parents but also her nurses. They received training in the NICU and developed the necessary skills to care for Bella at home. Whirlwind moments and emergency visits became part of their daily lives, but their love and determination never wavered.

Bella is now 16 months old and has undergone multiple surgeries. She attends therapy sessions and special classes tailored to her needs. Eliza acknowledges that her journey is different from others, but she wouldn’t change it for anything. Through all the ups and downs, being Bella’s mother has taught her invaluable lessons about love, strength, and resilience.

A Message of Gratitude

Eliza concludes her story by expressing her gratitude for the immense support they have received. Friends, family, clients, and the online community have all come together to make their journey easier. She acknowledges the unpredictability of life and highlights the importance of embracing change and finding strength in the face of adversity.

Thank you, Eliza, for sharing your touching story. Bella is a precious and beautiful child, and your strength and love as parents shine through. Stay strong for your amazing girl.