Not long after Violets silent reflux settled a bit and she could spend hours at a time without writhing and arching her back in pain. The differences in Violet and Henrys development became obvious and smacked us full on in the face.
We guessed it was due to her incredibly hard start but there was that niggling “parent superpower” feeling always there. Something wasn’t right.
Around 7 months old I approached the GP specifically about Violets development. She was unable to sit up unaided, grasp or play with toys, never touched her feet, struggled to roll, the list went on. They reassured me that she would catch up, that it was nothing neurological to worry about and they would refer her for an assessment by a paediatrician.
Firstly we had a development checklist assessment completed by the health visitor. This showed Violet had areas of severe delay, mainly in her gross and fine motor skills. But these were the equivalent of a newborn. Nothing we didn’t already know but seeing it in black and white was something else.
We saw Violets consultant paediatrician about her reflux and CMPA, while there I mentioned about Violets development and that we were waiting to be seen about it. She did an assessment while we were there. She noted low tone to Violets trunk as well as the fine and gross motor skill delays.
She stated she would refer Violet for Physiotherapy. This didn’t transpire until after I complained. In the meantime we had an appointment come through with another consultant paediatrician. I told my husband not to take time off work as it would be another assessment. This paediatrician assessed Violet and said these words “Violet may need care in every aspect of her life, for the rest of her life” That I needed to be prepared to have multiple medical professionals involved and many appointments. She would need blood tests for metabolic disorders and genetic conditions.
I left that appointment in a daze. I cried my eyes out. He was so blunt and offered no support. My husband wanted to punch him when I relayed the conversation. I made a complaint, it was the worst experience. Looking back everything he said was correct and in fact he was the only brave physician to actually say it as it was. But there was no compassion, no empathy and no support offered. That’s what was so wrong.