Sazzle Blogs

Jesy Nelson, SMA, and the Importance of Early Detection

I can’t stop thinking…

I don’t usually write about things like this, but this is something that’s been sitting with me and I can’t stop thinking about it. 

I’m sure you’ll have already seen or read it in the news… but I can’t stop thinking about Jesy Nelson…And her twins.

Ever since I saw her Instagram post about her girls being diagnosed with SMA it’s been sitting with me in a way I can’t really shake. Not just the diagnosis itself, but the fact that she raised concerns at the doctors multiple times, dismissed and was reassured it was just prematurity.

And I can’t stop thinking about how different things might have been if things had been picked up earlier.

If SMA is detected at birth, the outcome following treatment is paramount to living a full & “normal” life. However, for Jesy & her twins… the diagnosis was too late (at 8 months), being told they have a severe muscular disease. 

Learning that there is a small blood test that can be done when babies are newborns, one that can identify conditions like this early, really stopped me in my tracks.

Because we already do the heel prick test. We already take that tiny bit of blood in those early days when you’re exhausted and emotional and just trusting that everything being checked is what needs to be checked.

And yet this test isn’t routinely done.

How have we now have a vaccination for chicken pox, and yet a simple blood test that could be genuinely life changing still isn’t part of routine screening??

Why??

Jesy, opening up to the public, she’s a stronger woman than me! So brave!! And she’s not pointing the finger at anyone, simply doing it to raise awareness to bring some goodness out of the situation. 

She had a gruelling pregnancy, with the fear that they both may have not made it… but they did! And how wonderful they had the care available to deliver (what she thought) two healthy baby girls!

& now learning how much their lives have already been shaped by something that could’ve been avoided if tested and treated early on. How their futures may look very different to what any parent imagines.

On reflection it makes me feel so thankful that my little girl is a healthy & happy.

It’s shocking to think that a simple blood test could change so many lives, and yet it’s not routine. Jesy’s openness makes me wonder…what more can we do to make early detection the norm? I’d really like to hear from others – what do you think could help raise awareness for newborn screening?

🤍