My Strong Little Journey: Alison & Hazel- Unexplained Torticollis
Hello there. If this is your first time visiting My Strong Little Body, welcome! My name is Alana and I am a paediatric physiotherapist from Queensland, Australia.
My latest project is this: My Strong Little Journey, and it has been such an honour and privilege to be a part of.
I’ve asked real Mums and Dads, with real experiences of paediatric physiotherapy to share their story with me (and you); to let their guard down, and tell it how it really is on the other side of the fence. What it feels like to be the “parent of the patient”.
Sometimes the journey will be nice and smooth and simple and all the loose ends can get tied off nicely. There is a beginning and an end. A cure even.
But more often than not, having a child with a health condition can be really complex and messy. It’s a long, winding road. It can be tough on families. I’ve asked these parents to tell their story how they would’ve liked to have told their own friends and family. What they would have liked to hear themselves in the early days.
What I do know is this; these stories, no matter how small, are going to be incredibly helpful and reassuring for families going through similar experiences themselves, and I am sure they will also be really valuable for therapists too. Giving us the opportunity to walk in their shoes, even if just for a moment, is a wonderful gift these parents are giving and I am so humbled these families have opened up to me like they have.
So thank you for sharing your story today Alison. Alison is the lucky Mumma of Hazel who is now 7 months old.
LET’S HEAR ABOUT Hazel’s STRONG LITTLE JOURNEY AND Alison’s experience as a mother, having to deal with seizures and unexplained torticollis.
My name is Alison I am a mother to my first child Hazel Grace, we live on a small farm in South West Victoria.
Heywood to be specific; a small town with a population of 1500. Most of our family live up North in NSW so we like to think of our animals are our closest family. Our tribe consists of 2 greyhounds, 2 horses, 2 goats, 7 chickens and 5 guinea fouls - I know right!
Getting pregnant was easy and possibly a bit of an accident - whoops! We always planned a family but maybe 2 or 3 years down the track. We were both focused on our careers at the time so the news was quite a shock.
Hazel Grace arrived 2 days early: a perfectly healthy baby girl.
I honestly did not think I was ready for the journey ahead, little did I know what this journey would entail! I just knew life was about to change drastically and it did.
The day Hazel was born was a roller coaster and we’ve been on it ever since. It was planned she would be induced at 39 weeks, but as she likes to do things on her own terms (I've learnt) she decided she would come naturally 2 days early (38.5 weeks). I was over the moon as I was not particularly keen on the induction process. She came at 9.03am on the 4th of January; a perfectly healthy baby girl!
We couldn’t have been happier and so it began……
All things were normal; she was eating pooping and sleeping as per the newborn life, all seemed dandy. At our 6 week check up with the Maternal and Child Health Nurse (MCHN) she referred us to a physiotherapist for what seemed to present as torticollis (a tight neck), so off we went to the local Physio. She gave us exercises and stretches aimed at treating the torticollis. We did them religiously & all things were going well, until 1 day we noticed the head tilt had changed sides. We came to learn that torticollis does NOT do this, and it had the Physiotherapist scratching her head.
She asked us if we had noticed any seizure-like activity or other strange movement or behaviour, which at that point was a no.
At this point the Physio, MCHN & GP all thought it was very important we see a paediatrician. These three particular health professionals in particular have been so very supportive from the start, until this very day.
Some weeks past after the the paediatrician referral - no news. So we waited. This was the 1st & most disappointing part of our journey as they classed us as low priority.
When Hazel was 11 weeks she was admitted to hospital as she began to seize at home.
We spent a week in our local hospital in which Hazel endured uncountable IV needles, blood tests, we had to fast her for 48 hours, she even had a lumbar puncture. And none of this happens under local anaesthetic.
With no answers from any of these tests they decided it best we were flown to the Royal Children’s Hospital. We spent another week there; more blood tests, she had 2 GAs while admitted, an MRI, EEG and we saw neurologists, opthamologists, metabolic doctors and for the most part, a physiotherapist & occupational therapist.
It was here where my heart truly began to break.
Before this, my mindset was "its just epilepsy she will grow out of it and all will be fine". They conducted a neurodevelopment assessment on Hazel in which she scored very low. I felt my heart in my throat as they started talking of high risk cerebral palsy, early intervention, & NDIS funding. I felt sick in my stomach for weeks.
My local Physio is a true angel. I called her while we were still in hospital to talk about everything & start a plan. I look back & think I really would not be where I am today without my Physio. She was an incredible support & still is. She would talk to me between appointments on the phone & for that I will always be grateful.
Hazel has contained to have seizures despite being on anti epileptic medication. We know it can take time to find the appropriate dose so we try to be patient. To this day Hazel has been hospitalised several times & more extensive tests have been conducted. We do no know why or what is happening, but we know Hazel has hypertonia (tightness), alternating body tone, & epilepsy.
BUT most of all she has a heart of gold & is tough as nails. She wears the biggest grin on her face & continues chatting up the all nurses and doctors despite all the needles. Her personality is huge & she swoons on everyone she meets.
Tummy Time on a therapy ball for Hazel was part of her physiotherapy routine.
Physio for us involves lots of stretching, massages & magnesium baths (mainly for fun). It is about meeting important milestones, rather than leaving her to her own devices.
We practice things such as encouraging mid line play, ball therapy & tummy time. With lots of hard work, Hazel is making huge progress & is now tracking along the 50th percentile for development.
There are so many things to be proud of; from smashing out huge milestones like rolling at 4 months, grabbing a toy out of reach, using both hands to play & so much more. We have no doubt she’s going to achieve great things. Hazel has a lot of people scratching their heads & we don’t know if we will ever have answers, but we will work hard to ensure she reaches her absolute full potential.
There have been a lot of difficult moments over time. I was overwhelmed with negative thoughts like: "I did not sign up for this."
I sobbed more times in a day then I care to admit.
"What was her life going to look like?"
'Was she going to walk and run like other kids?"
These thoughts constantly plagued my mind.
I constantly compared her to other children her age, desperately trying to validate they were wrong about my girl.
The thought of raising a child that was not ‘normal’ terrified me, & if I could have run away & hidden under a rock I probably would have. But she needed me.
I started to change my mindset around "Normal"
"What even is normal? And who wants normal anyway?"
I began to embrace our individual journey, unique to the rest & I truly feel blessed to be different. All of this has changed my perspective on life and now I wouldn’t have it any other way.
Beautiful Hazel at 6 months. “100% Perfectly Different”
She is 100% perfectly DIFFERENT!
My advice for anyone going through a similar experience is to:
Surround yourself with beautiful supportive people
Choose your health professionals wisely (they will be your backbone)
Talk about your feelings
Find support groups of people going through a similar experience
Be kind to yourself
Let your self have bad days but try not to let them become bad weeks, & if they do, seek help!
And please know, you are not alone.
NOTE FROM ALANA
I want to extend my thanks once again to to Alison, for opening up and telling us her story of being Mum to Hazel. I hope with all my heart it resonates and is helpful to other Mums and Dads going through a similar experience. I find that the families who do not have a diagnosis have the most difficult time of all - the unknown is a scary thing, and I find it really incredible how Alison has embraced the experience so far, despite this. I love her quote ‘she is 100% perfectly different'.
I have an update on Hazel for you too - Just 2 weeks ago, Alison very proudly shared some videos of Hazel starting to crawl at 6.5 months. For a baby with the amount of medical intervention she has had, this is such an incredible feat. As you can imagine, Alison is just so proud of her (though said she wasn’t prepared for this to happen so quickly!) and so excited for the journey to come.
Do you have a story you would like to share? Please get in touch. I would so love to hear from you.
And if you’d like to learn more about my baby development guide My Strong Little Body that Alison has been using with Hazel along her developmental journey, then you can check it our here.