Mum of toddler with facial deformity says her 'heart breaks' when people stare

A mum of a toddler with a facial disfigurement has called for kindness and understanding, after her heart was ‘broken’ when people stared at her two-year-old daughter.

Eliza Jamkochian Bahneman, 36, and her husband Erik, 41, were overjoyed when they discovered they were going to be parents back in 2018, after nine months of trying to conceive.

But when Eliza gave birth, her heart sank when she noticed everyone in the delivery room had ‘looks of confusion on their faces’.

Isabella was born with Treacher-Collins syndrome, a genetic condition that affects the development of the facial bones and causes deformities.

She was born with microtia, hearing loss, small and recessed jaw, a small airway, and a soft and hard cleft palate, and has already undergone issues related to the underdevelopment of her facial bones.

Eliza, who is currently pregnant with her second child, said: ‘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.’

From the moment Isabella arrived, her parents, from Concord, California, have had to contend with the knowledge that their child will be stared and and judged as a result of the way she looks.

Eliza says her ‘worst fear’ is that her daughter will be bullied because of her facial disfigurement, and that strangers already stare and make comments.

‘My husband and I had never heard of Treacher-Collins before, so it was certainly a learning journey for us,’ said the mum.

‘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?

‘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.’

Her heart breaks when Isabella smiles and says ‘hi’ to strangers who stare at her, only for them not to respond.

Eliza said: ‘We get stared at a lot, and now we notice her noticing it. 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.’

Isabella’s parents plan to explain her condition to her when she gets a bit older.

But in the meantime, Eliza wants to share Isabella’s story to raise awareness of Treacher-Collins syndrome and encourage people to show kindness to those with a visible difference.

‘We are all born with differences and some are more visible than others,’ Eliza said. ‘The world would not be so colourful if everyone was the same.

‘Isabella is so vivacious, full of life and love. She is so intelligent and resilient. She loves attention and wants to learn, she is full of energy and has so much enthusiasm.

‘Regardless of how your journey starts as a parent you end up figuring out your new normal.

‘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.’

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