The birth of little Bella on October 25, 2018 was a surprise for Elisa Barneman and her husband. She said Bella was born several weeks premature and she also had a rare disease called Treacher Collins syndrome. In this moving story, Eliza shares her experience raising a daughter with the syndrome and the lessons she learned along the way.
A journey of unexpected change
Eliza begins her story by reflecting on the emotions she felt when she found out she had a child with her husband. Along with the excitement of starting a family, there was also anxiety and nervousness. Eliza was lucky that her sister, sister-in-law, and several close friends were pregnant at the same time. They built a support system where they could share both the joys and challenges of pregnancy.
As the due date approached, Eliza and her husband diligently prepared for the baby’s arrival. However, Vera’s early arrival surprised them. Eliza was eager to become her parent, even though she was completely unprepared and confused at first. Little did she know that Bella’s arrival would be different than she had imagined.
A moment of chaos and silence
When Bella was born, Eliza knew something was wrong. The room was silent, and the air was filled with confusion. Experts came and went, writing notes and evaluating Bella. Eliza couldn’t understand why so many people would intrude on their special moment. And she met her daughter for the first time. Bella looked “different.”
Eliza realized that her Bella’s birth would be celebrated differently than the births of her other children, and her heart broke. Her mind was filled with questions and she wondered why her life had reached out to her so unexpectedly. In the midst of her anxiety, Eliza found solace in her mother’s loving words that everything would be okay.
Support and communication courses
Bella was immediately taken to the intensive care unit for further tests and treatment. Separation from her child was painful for Eliza, and she couldn’t help but feel devastated and rejected. However, thanks to the support of his friends and family, he was able to connect with top doctors and surgeons. Bela’s village began to expand.
The decision was made to transfer Bella to UCSF Benioff Children’s in Oakland. Eliza couldn’t help but feel helpless when she saw her young daughter surrounded by electrical wires in her new hospital room. But in that tender moment, Eliza sings a song to Bella, letting her know that her mom and dad will always be there for her.
Adoption of new standards
Bella’s medical journey officially began at UCSF. The days were filled with inspections, evaluations, and specialist visits. The NICU became their temporary home and their families gave them endless support and love. Bella Syndrome was diagnosed as Treacher Collins, a rare genetic disorder that affects the development of facial bones. With this diagnosis, she realized that Bella would have to face many surgeries and problems throughout her life.
Eliza and her husband assumed the role not only of Vera’s parents, but also of her nurse. They trained in the NICU and learned skills to care for Bella at home.
Stormy moments and emergency visits have become part of their daily life, but their love and determination never waver. Bella is now 16 months old and has had several surgeries. She attends therapy sessions and special classes tailored to her needs.
Eliza acknowledges that her path is different from everyone else’s, but she wouldn’t trade it for anything. Through all of her ups and downs, Bella’s mother taught her valuable lessons about love, strength, and patience.
thank you message
Eliza concluded her story by thanking them for the tremendous support they had shown her. Friends, family, customers, and online communities came together to make the trip easier. It emphasizes the importance of recognizing the unpredictability of life, embracing change, and finding strength in the face of adversity.
Eliza, thank you for sharing your inspiring story. Bella is a precious and beautiful child, and your strength and love as parents shines through. Be strong for your wonderful daughter.
