A heartbroken mum said nobody congratulated her after giving birth to her disabled daughter a few years ago, saying her baby 'deserved to be celebrated’.
Eliza Jamkochian Bahneman, 36, and husband Erik, 41, had been trying to conceive for nine months when they found out they were going to become parents in 2018.
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But when she eventually gave birth, the moment ended up being one of ‘confusion’ as she realised ‘something was wrong’.
Her daughter was born with a genetic condition called Treacher-Collins syndrome, which affects the development of the facial bones and causes deformities.
Isabella was born with microtia, hearing loss, small and recessed jaw, a small airway, and a soft and hard cleft palate, and soon began to experience problems related to the underdevelopment of her facial bones.
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Speaking in 2020, Eliza recalled: “When she was born, I noticed a really small folded ear, but I was told babies look a bit weird when they are first born, so I didn’t think much of it.
“But as I looked around, I knew something was wrong. Nobody was congratulating me, and my mother and husband looked confused and scared.
“It was strangely silent and then the doctor left the room. I had no idea what was going on.
“I finally got to hold Isabella she looked different. But I fell in love with her instantly and knew everything was going to be okay.”
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Eliza, from Conchord in California, has always worried that Isabella would be judged as a result of her looks, saying her ‘worst fear’ is that she would be bullied because of her condition.
“My husband and I had never heard of Treacher-Collins before, so it was certainly a learning journey for us,” she continued.
“We felt confused and questioned everything. Was it something we did or did not do? How can something like this happen? Why us and our baby girl?
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“I knew my motherhood journey was going to be different. But I knew my baby deserved to be celebrated.
“I was ready to talk about her, answer questions and raise awareness about her condition.”
Eliza said her heart breaks whenever ‘vivacious’ and ‘intelligent’ Isabelle smiles and says hello to strangers who stare at her – only to get no response back.
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“We get stared at a lot, and now we notice her noticing it,” she said.
“She’s very observant. She will try to break the ice by saying ‘hi’ several times but unfortunately she gets no response back.
“I pretend not to notice as she is young. My husband and I have decided to say something informative and non confrontational to anyone who stares.
“One time an older woman looked at Isabella and said to her husband ‘look at that little girl, something is wrong with her’. That hurt.
“I just want people to be kind and understanding.”
Eliza said the world wouldn’t be so ‘colourful’ is everyone was the same, and that we are ‘all born with differences’, but that ‘some are more visible than others’.
“Regardless of how your journey starts as a parent you end up figuring out your new normal,” she said.
“It might not be the same or what you wanted and you might endure a lot of heartache and tears.
“But in the end you create your path with your new normal. How we paint the path for our children is how they will view the world.
“We love Isabella more than anything. She is everything we ever wanted and more.”
Topics: Parenting
Jess Hardiman