Our Journey with Orla


Anna and Steve knew nothing about CHARGE syndrome before their daughter, Orla, was born. An advanced scan detected a unilateral cleft lip, but there was nothing else to be concerned about. However, after Orla's birth they entered a world they describe as confusing, terrifying and despairing. As time passed, however, they found the world of CHARGE to be full of fascination and interest. They tell their story here.

By Steven Baker

I had awoken to the sound of a wailing phone on the morning of Orla's birth. Bleary eyed I grabbed it in a panic with the expectation that my partner, Anna, had gone in to labour.

I couldn't stay overnight with her due to Hospital policy, but we didn't live too far away. I had gone home the night before and sat about the house thinking about nothing but the prospect of welcoming a little girl into the world. I was expectant and nervous; on the second scan (20 weeks), something was picked up by the sonographer, and her hesitancy and nervousness sounded a note of dread in our hearts. A unilateral cleft was designated. We were heartbroken. This was our first child. It seemed like a nightmare. We spent the rest of the day in a haze, engulfed by confusion and angry that a moment that was to be celebratory was now greyed and benighted. 

a moment that was to be celebratory was now greyed and benighted

We had scan after scan and the sonographers were happy at the development of our little girl and that no abnormalities were present, at least those which are detectable in pregnancy. 

"It's started," said Anna. 

"I'm on my way!"

I grabbed my things and headed out the door. The day was bright and warm and a sense of real joy alighted on me. I sat On the 159 to Westminster beaming and thinking about the logistics of what we were going to do, how we were going to arrange the nursery and what I was going to sing to her at bedtime. I remember a moment, the bus standing in traffic, at the lights, when the weight of what was just about to happen to Anna and me descended. PARENTHOOD! 


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