Four-year-old Isabella (Bella) Milena Bahneman is as sassy and sweet as they get. She’s bright, and fashionable and attends preschool, swimming lessons and gym class. She has a heart of gold and a very rare conditing known as Treacher Collins Syndrome.
From the moment Bella was born, her mum, Eliza, was determined to protect her beautiful rare gem – to help her shine and to guide her through this world. While her arrival was not celebrated in the traditional birth fashion, Bella is a rare and amazing gift for everyone in her life.
Why isn’t anyone congratulating me?
Eliza and her husband, Erik tried for a baby for nine months before falling pregnant with Bella, their first child. They were over the moon and couldn’t wait to welcome their daughter. Eliza’s pregnancy was smooth and easy and she underwent monthly ultrasounds and all the prenatal testing.
At 35 weeks, Eliza went into labour and, after 12 hours, Bella arrived.
As Eliza shares with Newsner:
“She arrived sunny side up, weighing 5 and a half pounds. Upon her arrival, I noticed a really small folded ear. I was told babies look weird as soon as they come out so I didn’t think anything of it.
She was so tiny, red, and vulnerable. I was excited and ready to meet our baby girl! I was smiling and anxiously waiting to hold my baby when I realized something was not right.
Why isn’t anyone congratulating me? Why is my husband so confused and scared? Why can’t my mom look at me? Why did my doctor step out? Why are all these other people coming into my room?’
My room was silent. No one said a word. The silence tore me apart, it broke me, shattered my heart. I broke down, shaking, scared, confused, and lost.
Writing this moment breaks me. With a heavy heart, I revisit these memories and remember my daughter’s arrival was not celebrated.”
Specialists were walking in and out, writing notes, while Eliza remained confused and scared.
An experience that is supposed to be special, was scary. The room was silently chaotic.”Â
Always be protected
One doctor informed Eliza that Bella would need to be rushed to NICU. She still hadn’t held her baby. Before Bella left for the NICU, Eliza asked to hold her.
They put Bella on my chest and she looked so softly into my eyes. I will never forget that look, a look that said, ‘Mommy I am scared.’ It was also a look that brought comfort to me.
I whispered to her no matter what happens she will always be protected.”
An hour later, Eliza was wheeled out of recovery into the NICU to be with her daughter and husband. As she exited the maternity ward, there is a button new mums are asked to push – a button that plays a lullaby.
I was asked to push the button. I didn’t want to. I wasn’t celebrating. I didn’t even know if my baby would ever come home or if she would ever be okay. As the lullaby played, I cried internally. I will never plan for anything again.
NICU became our home after Treacher Collins Syndrome diagnosis
In the upcoming days, Bella was transferred to a different hospital and put on a strict routine. She was officially diagnosed with Treacher Collins Syndrome, a rare genetic condition that affects the full development of the facial bones. This is the same syndrome the little boy in Wonder has.
What is Treacher Collins Syndrome?
Treacher Collins Syndrome, or TCS, is a genetic disorder that affects the development of bones and other tissues in the face. It is caused by mutations in one of three genes.
People with TCS typically have a range of facial abnormalities, including underdeveloped cheekbones, small or absent ears, downward-slanting eyes, and a small jaw and chin. These physical features can affect breathing, eating, and hearing, and may require multiple surgeries throughout a person’s life to correct or improve.
While there is currently no cure for TCS, treatment options are available to manage the symptoms and improve quality of life.is only present at birth and only 10% of the time can it be detected via ultrasound. One in 60,000 children is born with this syndrome.
Doctors confirmed Bella was also born with microtia, hearing loss, small and recessed jaw, a small airway, and a hard cleft palate. She went in for her first surgery at just a few weeks old and remained in the NICU for 8 weeks. Eliza and Erik would visit every day but having to say goodbye every night was devastating.
“We never knew we would come home to an empty nest. I would wake up in the middle of the night to pump and was able to log into the NICU cameras to watch Bella. I connected with my daughter through media. That was my normal.
The NICU was our home. Between my parents, Erik’s parents, and ourselves, Bella was entertained throughout the day.”Â
During Bella’s NICU journey, Eliza and Erik were also medically and properly trained to care for their daughter, something that most certainly saved her life several times when she did arrive home as Bella experienced several emergency visits to the ER and choking situations at home.
Despite the unexpected journey with Treacher Collins Syndrome, Eliza wouldn’t change it for anything.
“Life is unpredictable and sometimes, we are not prepared for change. Life is fragile, beautiful, and at times, dark. I am grateful to be able to provide Bella with life’s essentials. Isabella has a huge support system, from friends, family, clients, and social media. With everyone on our journey, it has been easier to adjust to our normal.”
In 2020, Bella became a big sister to her little brother. She doesn’t use a feeding tube anymore and continues to grow, learn and shine. Eliza hopes to raise awareness for Treacher Collins Syndrome and to help others understand this condition.
Our rare diamond
Eliza writes on her Facebook page:
“Bella is our rare diamond. [She] lives life to the fullest, she lives a normal life, attends preschool, speech therapy, goes to gym class and starts swim classes this summer. She wears a hearing aid (headband) all day aside from when she sleeps. She will change the world one day at a time.
Until then it is my job as her mother to do what’s best for her and that is to be open about her syndrome, troubles, struggles, and celebrations.
My heart aches for her future as I don’t know how the world will embrace our little girl who has a heart of gold. But we are here to protect her and guide her until then.”
