Our heart baby


The last week or two has been tough. Tougher than you imagine, but in ways you can’t get your head round until you are there in the thick of it all. 

Since we were 20 weeks pregnant with our little legs, we knew she would need heart surgery in her first year of life. We were lucky in many ways that this wasn’t needed when she was newborn and we were able to give her until she was just over a year old to be ready for this major surgery. 

With the operation cancelled twice, the second time being minutes before it was about to happen, and with last week being our third time lucky – (if you can call it that!) – we had well and truly been on an emotional rollercoaster. 

Those of you that follow my blog know that our eldest son is beautifully autistic and structure, transitions and need for reassurance in routine is essential for his wellbeing. Several times I sobbed in that hospital – not only because my little legs was having her surgery cancelled again and again but because my poor Charlie would have to cope with the uncertainty of all this upheaval. 

And you know what, he did – and he didn’t just cope, he handled things so well, brilliantly in fact…..


Seeing our baby in Paediatric ICU was the hardest thing I’ve ever dealt with. In theatre for over 6 hours and then on the PICU ward for 6 days…. the things we saw, heard and witnessed other people dealing with was heartbreaking…. something I’ll never forget. 

Seeing our baby so helpless, wired up and on oxygen is just the hardest thing… you want to be the one laying there for them. You want to take all the pain away…. 

The team of people at the Royal Brompton Hospital were outstanding. Our NHS is second to none. The nurses, doctors, surgeon, even the staff in the canteen….. everyone makes a difference to your time there. 

The Nurses on PICU work their socks off! We will be forever grateful for the love and kindness they showed our little legs. Charlie was very pleased to hand his donation to the nurses there – thank you to all Sparkle parents that donated – your money is going to a very worthwhile cause. 


I have been blessed with two very special children. Seeing her face light up and laugh for the first time in several days when he entered that ward will be a moment I’ll never forget. I could rant and let this blog post be about how upsetting and frustrating it is when people say things like “Oh you don’t have much luck do you, first your son is autistic and now all this with Sofia” …. but you know what I choose to see the positive, to see the light, the small moments of amazingness in even the toughest times.

Whatever it is that makes you different or imperfect is special to me…. and I will take the special…. every time xxx

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3 comments

  1. Well Jane I have thought and thought but like you I fail to find anything less than perfect about your wonderful family. Different is not broken it’s special. With you all the way on that xx

    Liked by 1 person

    1. That’s what I wish I could change in others opinions – as for so many different is broken – how do we do that though? Can we change people’s perspective/understanding/opinion? Xx

      Like

      1. Jane, you and Charlie have already touched so many people .
        Those who don’t ‘get it’ are the ones who are missing out.
        Every small step brings us closer to reaching another person who will understand the journey. We just need to keep moving forward xx

        Liked by 1 person

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