If you’re familiar with my website, my Youtube channel, or my brand in general, then you probably already know that my daughter, Avery has complex medical needs.
Avery’s story is both a sad and a happy one. The strength and resilience of this tiny human still blows my mind. She is both unlucky and lucky, a tragedy and a miracle – and over the last year I’ve really been trying to keep my thoughts positive and focus on the latter of those statements.
I’m going to add a TRIGGER WARNING here, because although I am focusing on just how incredible my daughter is, her story may be upsetting to some. So read on at your own discretion – if you are easily triggered by trauma, particularly involving an infant, perhaps one of my other blogs would be a better read.
You’ve probably heard about babies born with oxygen deprivation, whether that be an already present condition, a labour complication or a premature birth – but this didn’t happen to Avery.
So how did Avery end up with a brain injury? You may ask.
Avery was born healthy, after a very straightforward 6-hour labour and two pushes, she was in the world, beautifully pink, crying, with not one concern.
We spent three exhausting, incredible days as a completed little family in perfect, oblivious, bliss.
I’m going to skip a little here, purely because my heart and mind are just not ready to relive how it all happened yet – but long story short, Avery survived a 40+ minute cardiac arrest.
That’s incredible right? I still can’t comprehend it, 40 minutes?! How is that even possible? Well it is, my amazing, strong three-day old baby girl did it.
What amount of damage can 40 minutes do?
It didn’t take a Doctor to tell me that Avery would have suffered some severe oxygen deprivation. After all, 40 minutes is a very long time – did I mention that my daughter is incredible?
A few days after Avery’s event, she had an MRI, which revealed that Avery had a severe brain injury. Her damage was mostly in the areas of her Cerebellum and Hippocampus. Was I shocked? No. Did that mean the news didn’t completely devastate me? Absolutely not. Was I still incredibly grateful that she was here and fighting? Heck, yes!
How did this damage present in Avery?
We are still very early on in our journey, Avery is only now about to turn 17 months old, so we still have a lot to learn about Avery’s brain injury and how it will affect her in the future.
The Cerebellum is responsible for motor skills, coordination, balance, posture… so in my non expertise, it pretty much sounds like that’s the majority of physical development, right?
When thinking of the hippocampus, my brain went back to what I had learnt from my Mum – she has a lot of knowledge about Alzheimer’s and Dementia from her job, so I immediately assumed Avery’s memory would be affected.
Physically, it doesn’t take close observation to see that Avery’s diagnoses line up with her development – it’s slow, inchstones, not milestones.
I’ll be honest, I have absolutely no idea if Avery’s memory is affected. I’d like to think it isn’t. She remembers people, TV programmes, routines – I can tell that by the beaming smile she graces our presence with when she’s anticipating her favourite things.
The Secondary Diagnoses
Avery’s primary diagnosis is Hypoxic Ischemic Encephalopathy (more commonly known as HIE) – for us non Doctor’s, it basically means a brain disorder caused by a lack of oxygen and blood flow.
Most of her other conditions are all secondary to her HIE. She has Cerebral Palsy, what type I am still unsure of, I can only assume her neurologist wants to give her more time before we can be certain – what we do know is that she has spasticity (I hate that word but it is the correct medical term) in her arms. That means that her muscle tone is too high, causing her arms to be very stiff and tight. Her trunk and neck however, are the opposite.
She was also diagnosed with Dystonia when she was six months old. Dystonia is a medical term for a range of movement disorders. Avery’s Dystonia causes her to have uncontrollable spasms.
She also has severe reflux, now this one we can’t be 100% certain that it was a direct result of her brain injury – she could have had it anyway.
Avery is also g tube fed – this isn’t a condition as such – but is still a direct result of her brain injury. Motor function and coordination are all needed to eat and drink as well. I had no idea that so much went into it – which kept me incredibly deflated all the times I tried to get Avery back on the breast – turns out it’s a lot of hard work!
Needless to say,
Avery is my daughter, not her disabilities.
It took me a really long time to really comprehend this point, guilt is a really tough pill to swallow. Avery has really helped guide me along the way – as she gets older, her character shows through, and man, doesn’t she have character!
Yes, she is disabled, there are things that she may never be able to do.
Will she walk? We don’t know.
Will she talk? We don’t know.
Will she ever be able to eat? Again, we don’t know.
The unknown is the single most hardest thing about this situation, but I found that when I stopped wondering what she will and won’t accomplish, and started solely enjoying her for who she is now, everything just felt so much more promising, and I found acceptance.
Avery will decide what she will do when she is ready, in the meantime, it’s my job as her Mummy to just love her and enjoy her for all of the incredible things about her right now.
And what can she do?
She can smile, she has the most beautiful smile that radiates joy to those around her.
She can play, with a little help from us she’s found things that she finds enjoyment in.
She can progress and develop, and she is (inchstones, remember!) Everyday, little by little, she is building strength and balance and coordination.
She can give and receive love – I don’t need her to be able to talk to know this without a doubt.
She can experience the world around her, there’s absolutely no reason why she should ever miss out. We’re in a day and age now where disabilities are recognised, accepted and catered for.
I could go on about all of the wonderful things about Avery and her special life, but I’m sure you get the point.
Avery’s brain injury does not define who she is, those sweet, amazing little things we discover about her each day are the things that matter.
She is my superhero, the strongest, bravest little girl I will ever know.