The morning of our baby’s diagnosis started like any other Wednesday with a newborn; in utter chaos. My husband Matt left for work early and I scrambled to breastfeed, shower, get some assemblage of breakfast together and drive my toddler and pre-schooler to their different care arrangements looking presentable, on time and with lunch.
However my phone was ringing incessantly and once I found it in the cavernous cave of my baby bag, I was alarmed to find eight missed calls from the paediatricians rooms asking me to come in that afternoon. I instantly knew something was dangerously wrong with the tiny baby I clutched to my chest when the paediatrician asked me where my husband was.
Even when, a few years before, a scan had revealed the tiny heartbeat of one of the babies I had carried for the first trimester could not be found, no-one had ever asked for my husband to be present.
When I arrived, I looked at the doctor, and saw his eyes were sympathetic and kind. This filled me with dread.
“Where is your husband right now. Is he in the city? He needs to be here for the news I am about to tell you,” he said.
The phrase blood running cold actually doesn’t do the feeling I had justice. Instead it was like a doctor taking an enormous vial of liquid nitrogen and inserting the icy mixture into my carotid artery, rendering my blood, my entire body, completely frozen.
At this point, my youngest child Harry was 20 days old. I was still in the midst of that warm, woolly haze of new love and sleep deprivation.
For the rest of that time in the doctor’s surgery I experienced an out-of-body situation and looked down on the unfolding horror show. The paediatrician looked at the woman that was me and said calmly, “I have the results for your baby’s heel prick test. Can you please call your husband and ask him to come here straight away?”
I called Matt, and spent the eight minutes it took him to arrive on Google looking into the heel prick test. The first entry said the heel prick tested for several rare but serious genetic conditions, of which cystic fibrosis is the most common. Being completely unaware of the other genetic conditions it tested, I repeated over and over in my head: please don’t let it be cystic fibrosis, please don’t let it be cystic fibrosis. Please let it be something else, just don’t let it be cystic fibrosis. I knew very little about the disease except that it caused lung issues, and that you died of it… young.
In that small, drab paediatrician’s room within an office building in North Sydney, my worst fears were revealed: the paediatrician revealed that Harry had the ‘life limiting’ condition of cystic fibrosis.
My first instinct, probably like any parents thrown down the rabbit hole of a new diagnosis, was that there must be some mistake. They must have the wrong baby. We had previously had two healthy children and had no family history of this chronic condition, they must have simply got it wrong.