Born on 12 May 2016, Alina was a bright girl, very sociable and with an excellent sense of humour, she enjoyed teasing her classmates with her superb comical timing, as well as dancing, with her favourite songs being the PotBelleez “Shout” or the Wiggles. As a child she was thriving. She understood both Hindi from her mother and carer, as well as English from her father. There was no question of any mental impairment or physical abnormalities.
Ali’s first word was around 12 months, it caught both parents by total surprise. She pointed at a water bottle and said “paanee” (Hindi for water).
She in particular enjoyed visiting Woolworths as she recognised many of the staff who would cuddle her while her parents could shop. It’s also where she was learning to walk.
There were only very mild concerns that she didn’t start walking until 17 months, but this was the same age as her father. She otherwise hit every milestone but she was often carried as she was a very entertaining child to her parents and anyone who would pick her up, all absolutely adored her.
Despite all this, she had a long persistent “chronic” virus, leading to some 40 visits to her GP, all for the same progressive symptoms. It started with conjunctivitis at 2 weeks old; Hand, Foot, and Mouth Disease (HFMD); rashes; vomiting; and migrating to her throat and lungs where it developed into frequent tonsillitis, wheeze, cough, croup and stridor.
All documented on her GP records, made by 15 different GP’s and hospital staff that all independently agreed she “just had a mild virus” and “it would pass within a week”. It never did, it always returned. Every symptom was very easily recognised and unmistakably viral, even testing positive to an entero/rhinovirus swab.
The number of times the parents had to deal with croup was far more than mentioned in the GPs’ medical records, but they had learned to spot the signs in advance (namely a metallic zinc smell on her breath in the late evening) so often gave her Redipred (steroids) prior to sleep in preparation for an otherwise night ahead of persistent coughing and a low grade temperature (sweaty head). One GP got so used to the frequent visits she just signed over a script for 5 repeats of this steroid. No GP seemed willing to escalate the issue, despite requests. The parents were told “she has back to back viruses from daycare” and were becoming very frustrated with the common belief by the Doctors that these were unrelated, despite having the same symptoms
In recognising childhood viruses, an inner city GP would have seen more than most, and it doesn’t take more than general parental knowledge to know these symptoms too
From 6 months old the parents were visiting the GP once every week, if not twice. They just noted the symptoms. Dr Sharma, one of the GP’s, advised the father of the “red flags” of concern for enteroviruses: fever, rash, lethargy, cough and stridor and the actions to take.
It was a peculiar illness, as the symptoms would flair up for a couple of hours and disappear just as quickly. On some occasions the GP would send the parents and Alina home as there were no visible symptoms at the time of consultation, despite them seeing them only earlier in the day. The illness had a baseline of regular symptoms; wheeze, sweaty head, cough, tonsillitis, dancing eye
The parents noticed that Alinas left eye was developing amblyopia when she was frequently wheezy, and this would develop into a cough by night. These symptoms seemed to happen simultaneously. She would have brief episodes of full body rashes, low grade temperatures, vomiting blood, pink eye, sore throat, croup, stridor and this distinct metallic smell on her breath. Another strange observation was If she heard a deep noise from the passing cars, regardless of how asleep she was, she would make abrupt and brief jerking movements, then fall back asleep. The parents knew it was unusual, but not its significance.
Prior to Alina’s birth, gestation had been particularly troublesome for mum and Alina. Mum developed hypothyroid, deteriorating vision and pre-diabetic symptoms and rested at home from 5 months. Alina was born by C-section after a difficult labour, a month after her due date.
Mum always had an intolerance to sugar, eating a mango or sugary product she would develop scratchy skin and a rash across her torso. She controlled this with antihistamines. As a result, all foods cooked in the house were made from base ingredients, and sugar was never used. Consequently, the only packaged food Alina ate was the staged baby formula, given before bedtime.
On one occasion Alina did eat a macaroon at her first birthday party and developed a full body rash within hours. The parents contacted the baker and asked if any unusual ingredients had been used. Almond flavoring was the only suggestion.