NOT A RISK! PRO-INFORMATION, PRO-CHOICE.

August 12, 2017

You know that conversation you have when you hear your wife ask you to make an appointment at the doctors for your son's four month vaccinations you say to yourself 'WOW he's four months old already, where did that time go?". Well Leo's now six months old, yes two months since I started writing this blog and just gone through his six-monthly vaccinations, it just goes to show how quickly time fly's. 

 

I began thinking back to when Emmy was having her six month vaccinations and what a world ago that felt like, and then you actually remind yourself how far you've come from then as a first time parent to now and how much your perspective has changed in the last six months since Leo was born.

 

You may have seen the ads for this week's upcoming 60 Minutes story on Down syndrome. I've seen the ad and have a basic grip on what the story is going to be about. I'm purposely writing this before the fact so you can have our point of view on the issue. Now clearly we're biased because of Leo, firstly because he's our son, but secondly because our realities of the last six months are completely different to what our expectations were.

 

 

Six months ago we'd never had even thought of getting to this point, less because we held little hope for Leo's well-being, more so because we were just so stuck in the mindless week to week 'groundhog day' routine of a newborn and a two year old that we had never bothered to entertain the thought.

 

So what's happened in the last six months? Well for a starter Liverpool F.C. qualified for next years Champions League play-offs, most of whose matches I was fortunate enough to watch this year due to the insomniatic (no this isn't an actual word - google it!) two year old, but there's been so much more.

 

The everyday milestones that your little one achieves when you have a newborn/infant are occasionally taken for granted, when they happen to your child with DS we've found that we're celebrating them so much more! 

 

Something as simple as opening both hands, grabbing onto a soft toy and bringing it to his mouth is celebrated with the same gusto usually reserved for first steps and engagements - not necessarily in that order.

 

After the initial round of specialist appointments early on in the piece, the last few months have seen us primarily focusing on the early intervention stages of Leo's physical development. Weekly physio appointments with an amazing paediatric physio near our home has been amazing for Leo's strength and physical development. I swear he's doing things at six months that it took Emmy much longer to do.

 

Some of the obvious things when developing gross motor skills are core strength for use in sitting, crawling, walking etc but even the ability for Leo at five or six months to be having tummy time on a ovular shaped exercise ball, to be lent to both sides and have him reach out with one hand to grab strategically placed items with his hand blows my mind.

 

I could hardly believe what I was seeing most of the time when I'd come home from work and Nomes would show me some of his new tricks. The most recent trick where Leo decided that he was fed up with being stuck on his side so decided to roll for the first time. You celebrate these little things when you have a child, you damn well punch the air when you have a child hitting these milestones early in life because the assumption at birth the first physio we had was that his progression may be delayed based on the physical limitations that DS places upon newborns. That physio therapist was quickly ushered out, and Neesha ushered in.

 

We aren't living in a fantasy world, we know that as good as Leo is going at the moment that he will at some stage have his own range of challenges in the months and years to come, what we've found though is that we're now less concerned about what we don't know and more focused on what we can work on.

 

The brilliant news recently from our physio was that Leo was placed into the 75th percentile, basically on par with other normal children in terms for his gross motor skills development, he's rolling from his back to his tummy, he's pulling himself up when grabbing our hands, he's weight bearing on his legs, he prop sits and he's eating solids in Emmy's high chair each day. 

 

Now the 60 Minutes story I'm hoping gives a balanced view of prenatal screening  the challenges and successes for families and people with DS, the pro's and con's of DS and the reasoning's behind why they aired the story. Ultimately our view will be very different to many others and equally similar to many more.

 

We were "low chance", we had regular scans at the obstetrician appointments and three detailed ultra-sounds during the pregnancy, NEVER did we consider that our baby would be born with DS 'cos the "testing" picks this up right?'. 

 

We did elect to have prenatal screening because when you're pregnant that's 'what you do right'? based on the medical profession standards and recommendations as the screening also looks for some more serious syndromes like Patau and Edwards, but looking back we were so naive to what we were actually screening for, and so when your results come back low 'risk '(their term not ours) you feel relieved that your healthy baby is just that.

 

It's the language used by the medical profession like 'risk' that probably needs to be looked at in my opinion, or at the very least have clear information provided as standard for anyone who has prenatal screening to clearly inform them of what they're looking for, at the moment there are inconsistencies and appropriate support rather than worst case scenario would be beneficial for those diagnosed. 

 

Looking back we had two completely different experiences with Emmy & Leo. Emmy's was a detailed discussion around the results of the scans in terms of the chances (e.g. 1:5000) of having a child with T21, the discussion in relation to Leo was short and sharp, 'You're 1:5107 you're low risk, blah blah blah we'll send these results to your obstetrician'. 

 

With Emmy we we offered the additional Harmony testing that would confirm what we had already been told that she did not have T21, but we opted not to have it because (1:5000), what are the odds right?! 

 

With both kids we never considered any options based off the screening results, fortunately we were never put in the position of having to make that choice but many do, a tough decision for anyone I'm sure that is often made based on the 'risk' associated with the screening results, not a confirmed positive 'result' and this I think is where the lack of information provided comes into play for many households having to make these decisions about their families future. 

 

We are so grateful because we have a beautiful son that opened our eyes to a community that we would never have known existed. Nomes is a part of an online T21 mums Australia group and guess what, they discuss normal mums group stuff like which pram they have, when to start solids and baby poop, as well as DS related topics but more importantly they are supportive, informative and non judgemental. A group of strong women who have helped her understand that there are challenges, good times and tough but we are never alone.

 

We are pro-choice, we don't judge people for their decisions in relation to prenatal screening, but we are also pro-information that supports making informed decision and repeatedly tell people to ask us questions because we would prefer to answer than someone assume they know our response. Leo is not a risk, he is not a burden, he has enriched our lives so much in the last six months.  

 

We have chosen to publicly document and share Leo's life, not so people feel sorry for us, but to hopefully show that Leo doesn't "suffer" from Down Syndrome, we don't suffer because we have a son with Down Syndrome and that it makes us stronger as a family, it makes friends more informed and hope by sharing his journey as he gets older the soccer mums that see him at school read the blog and realise that he and his family are pretty normal and how amazing he is. 

 

Naively we thought a test would predict that we would have a perfect child, what that screening missed has given a family that we never imagined. Our lives are fuller, the milestones are celebrated, his smile captivates a room, the giggles shared between him and Emmy are contagious. He has changed our perception of a perfect family, will we face challenges? YES. Would we change it? NEVER

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