Mia Simone, our second child and eldest daughter, was born on the 27th July, 1979 – two weeks past her due date; weighing 6lb 2oz. To all intents a “normal” baby, following a fairly straight forward pregnancy apart from my contracting a severe bout of glandular fever early on, which had required hospitalization. My two distinct memories from this time were firstly the sinus that was evident at the base of Mia’s spine. We were advised to have an x-ray taken at 6 weeks to confirm the Doctors opinion that it terminated before impacting on the spinal cord, and was nothing to be concerned about.
The second was a passing comment made by one of the elder midwifery nurses – a woman I had worked with during my nursing years at the same hospital; and someone whose judgement and experience I highly valued. She had worked for many years amongst the Aboriginal people in northern Australia – and she insisted that Mia’s name was of Aboriginal origin rather than the Latin/Italian meaning “mine” we cited. Turns out we were both right! Before we went home from hospital, she quietly took me aside and said “I don’t mean to alarm you dear, but please keep an eye on your babies hearing. She has a most unusual cry, and I have observed over many years this often is an indication of hearing issues”. I appreciated her concern, which was duly noted – but would many years later regret not having given it the credence it deserved.
Mia grew slowly, but steadily and was a quiet and placid baby – doted on by big brother Daniel and her extended family. At 6 weeks of age we returned to our GP for the usual check-ups; and although she wasn’t supporting her head well, the x-ray of her spine confirmed what was explained as Spina Bifida Occulta – and there appeared to be no reason to be concerned that anything further was amiss.
Prior to Mia’s arrival, my father-in-law came for a visit – most unusual, and obviously with a purpose - the prodigal son was required back on the family farm. We had agreed to move our wee family once the new baby was born, and hence in the following January we shifted to the family property - 3 hours south of my home town, deep in the Otway’s and far from all that was known and familiar to me. The critical point from Mia’s perspective was the disconnection from our GP and the child health team who had been taking an interest in her development. For me, the world turned upside down. I no longer had daily visits with my own family, I knew nothing about farming and I now had a husband who worked 7 days a week for little reward – although he enjoyed being at home on the family farm working alongside his Dad.
On occasional visits back to my family, we would visit our old GP as he continued to take an interest and monitor Mia’s progress from afar. Once she had been weaned from infant formula onto regular cows’ milk, she developed daily vomiting episodes after almost every feed, often projectile. Her inability to hold foodstuff down, and potentially aspirating, was I’m sure a contributing factor to the regular bouts of bronchitis and several hospital stays with pneumonia. We soldiered on; despite the vague insinuations of poor parenting from some quarters which were hurtful and unhelpful.
At twelve months of age, Mia could sit if well supported and was generally a happy soul who enjoyed people’s company, loved to be out and about on the farm and with the animals – most especially the orphaned lambs; a job the children and I inherited! Interactions with medical folk generally resulted in sage head nodding, pats on the back for encouragement, murmurs of ‘’she’s just a bit behind’’ and little else of value. During a routine early childhood check, the maternal health nurse determined what she believed was a hearing deficit and we were referred to an ENT specialist. Several months of treatment with daily doses of Sudafed (pseudoephedrine) were prescribed; which had no discernible benefit.
It is perhaps important here to note that its 1980 – long before the internet, mobile phones or email communication. We lived in an isolated part of the state; an hour in one direction over the Otway ranges dodging log trucks and milk tankers – or 45 minutes in the other traversing the last remaining original portion of the Great Ocean Road; a blue metal track built by returning solders from the 1st World War through thick native forest - before any services were available. Our landline worked sometimes, if the TV had reception at all you had a singular channel selection of the ABC, and snail mail was the norm.
By 18 months of age Mia was sitting unsupported and would ‘’swim’’ around the floor on her tummy, but was clearly lagging well behind expected milestones. On a visit home to my family we met with our old GP, and he referred Mia to a Paediatrician for further investigation. Appointments were made, and a series of tests requiring a hospital stay in Geelong arranged. I vividly remember asking one of the medical interns if they had any results that might shed some light on Mia’s delay – and he nonchalantly replied “’Oh, we just call them floppy babies” and walked off. We went home none the wiser for our stay.