I wanted to create a blog to document the journey I’m about to embark on, to be able to look back and see the struggle and the strength I’ve gained and endured.
It all started with a stock standard trip to Thailand with my partner Tom, little to our knowledge carrying an extra passenger on our return home!
I hated pregnancy I don’t mean just a loathe I mean a hate-HATE (just ask Tom for confirmation) I didn’t have the smoothest of rides, one of the many with the peak of Zeka virus in Thailand and other Northern Hemisphere countries at the time, followed by a very drawn out screening test which eventually lead to having a amniocentesis, everything of course came back perfect- and then all of a sudden I’m in the third trimester and I’m actually having a baby soon WTF.
Birth plan whats that? I wanted freedom, water, minimal intervention/pain relief and as less clinical medical feely as it could get- what did I get? Induction, strapped to a bed, legs in stirrups with my F$&#ING epidural wearing off right in active labour because I was being to slap happy with the trigger.
Fast forward and we have a beautiful baby boy named Bobby and myself and Tom are in absolute chaotic love with our little man, up until 3 weeks.
It all started with a poo. Yes a poo you will hear that word a lot, I was just lucky enough I had not one but TWO midwives on my team which picked up on the oddness of Bobby’s mid morning bowel motions.
His poo was grey, yip grey. Any mum knows babies poo comes in all weird shapes and colours right? I mean what mum didn’t get a anxiety attack when they first laid eyes on that black meconium nugget when they are merely a day old?! So heres me thinking this grey poo was just one of those phases. My ever so calm and collected midwife sent off a poo picture which in turn started the next series of events.
We spent a week here in Wellington hospital, daily tests, blood test after blood test and a lot of hospital jargon was been thrown around- first semi diagnosis was biliary atresia; he was jaundice, his poo was pale which meant the bile in his liver wasn’t filtering.
So up to Starship we go, I was in full blown denial this kind of stuff isn’t real this is what happens to other people. Our poor Bobby under went a few tests and a liver biopsy which they needed to preform under a general to take samples from his liver, the doctors were really preparing us for the worst if it talks like a duck and walks like a duck chances are it’s probably a duck. It was unquestionably the worst time of my life I cannot even begin to describe the pain I felt for Bobby, for our family I can feel my throat tighten and my eyes welling as I’m typing this now.
Then there was the wait. The wait for the biopsy, I’ve never felt so out of place and emotionless waiting days for that result, the buildup was unbearable but we finally got the answer we needed- Bobby doesn’t have biliary atresia! We really dodged a bullet with that one we were literally staring down the barrel of a liver transplant, I really needed the doctors to be wrong on that one.
But it left us in that awful place of limbo all over again- what is wrong with Bobby?
They were confident that it would be one of those things that “hopefully he will just grow out of it “type scenarios, Bobby has and is very well looked after by the Starship team and our paediatrician, they decided we would follow up with regular blood tests and would re group in a months time as he wasn’t causing any immediate damage to his liver.
That month was full of highs and very low, lows.
I felt normal, like we were a family again and then the guilt swallowed me whole because Bobby was still sick.
Finally the day arrived where we were to meet again with a specialist from Starship, and still I was in full blown denial. He went over Bobby’s results and had picked up on low levels of Alpha 1 Antitripsin, Toms always the forward thinker asking the need to know questions then theres me silently sitting in my shadow of denial, he wanted to be 100% that this was the cause so sent Bobby for a routine blood that specifically tests for Alpha 1- but you know that look, yeah the look of truth and sadness and I knew deep in the depths of my being that this was it.
Diagnosis day- I remember hearing the words, and yet denial still wanted to stick around my ears were ringing, my throat was so tight I could hardly catch a breathe, looking down at my son through tear filled eyes and it was for a spilt second I nearly lost all self control and it was then when I realised I was no longer in denial.
Alpha 1- let me try and explain it in a nutshell, It is genetic- yip so to some degree myself and Tom carry the gene, with this condition it literally takes two to tango. Our body naturally produces Alpha 1 this helps us fight and protect or lungs and liver from inflammation but in Bobby’s case he has inherited one abnormal gene each from myself and Tom, Bobby is a type ZZ which means he has little to no tolerance of being able to protecting himself it sounds far-fetched doesn’t it? almost unbelievable.
What it means is; Bobby physically cannot protect himself from any sort of smoke or passive smoke, pollution, dust, chemicals, sprays, common colds and of course 0 alcohol, now I’m having flash backs to my heavy partying ways when I was younger but in true Sara style I’m going to sweep that one under the rug until next time.
Sure this all sounds easily avoidable? I remember coming home from that appointment, Fireplace- now we need new heating, damp Wellington house- now we need a dehumidifier, all the cleaning products how am I going to clean- with water?! my usual mum bun with half a can of hairspray or that 3/4 full YLS black opium perfume? forget about using them again literally 😦
The list goes on he is my bubble boy, I still struggle with where to draw the line of excessiveness I want him to be happy AND healthy- So this is me Sara, first time mum learning the ropes of a infant, sleep dep, the milestones while learning to live with a rare genetic condition.
Until next time,