Miracles

Hearts are phenomenal. They beat around 110,000 times a day (for an average adult) and pump around 2,000 gallons of blood around our body. Did you know that the youngest person ever to have heart surgery was only a minute old?!

I remember when we first were told of G’s Turner syndrome, we focused on the life and death statistics, the ‘only 1-2% survive pregnancy’ statistic. Initially there was no mention of cardiac function. Cardiac problems. So when were were sent to Oxford’s John Radcliffe hospital for our first uterine heart scan (roughly at the mid point of my pregnancy), I was terrified. Why? What problems were they anticipating? It must be major if they aren't even waiting until she’s born. Luckily for us, for G, some of the common problems associated with TS (namely coarctation-narrowing-of the aorta) were not affecting our unborn babe.
We do know of girls, friends, within the Turner Syndrome family who’ve had surgery when several days old. I couldn't imagine the fear their dear parents would have felt.

So today’s fear over G’s third (or is it even fourth?!) scan in her little five years seemed somewhat irrational. At the last scan we were told her patent foreman ovule (hole) had finally closed, and that she had some slight abnormality if the aorta. But generally it was good news...

But it’s her heart. Our precious girl's heart. Hearts are the life and soul of the body. And heart problems can develop over time with TS, so we can’t be complacent. 

Now as mentioned in previous posts, G is beyond petrified when it comes to anything medical. So we knew that today would be a challenge. She screams the department down at every appointment regardless of whether anyone is touching her. Darn, today they needed her to be perfectly still, not hyperventilating and not trying to kick anyone that holds her down. Especially not the consultant. Prayers were needed. 

When the tantrums started earlier in the week, we knew why. The tears at bedtime, the anxious tummy, the not wanting to go to school, or eat her tea. It was all the pre-echocardiogram build up. The anxiety was through the roof.

So you’ll imagine our shock today when her name was called. No tears. When she strolled into the room after the consultant. No tears. When she laid as still as a statue on the bed, when they squeezed the cold jelly on to her chest,  and then performed the scan. No tears. For me it was one of those jaw hits the floor moments. 15 minutes later, scan over, not a single tear.  Shocked doesn’t even sum it up. A miracle for our miracle. Thank you for your prayers!

Results: a slight asymmetry of the aortic valve (which should look like a Mercedes badge, but in G’s case it’s uneven), but that’s all. Next echo when she turns 7. 

Phew. Thank God. The relief was almost overwhelming. 

TS maths research 

We’ve had the loveliest researcher from Cambridge University come and work with G recently. Rosie is conducting a study into maths difficulties and is focusing on Turner Syndrome (around 50% of our girls struggle with maths), and also people with discalculia. Now anyone who knows me knows that I LOVE maths, so I’m incredibly intrigued by this research. I can’t wait to read the findings!

First school assembly 

This morning before we whisked G off to her heart scan, she had her first ever class assembly. Eeeek! As a teacher they were always a huge stress of mine, but parents love seeing their children perform. Today’s was amazing. Nothing special to Joe Bloggs- it wasn’t all singing or all dancing,  but I thought it was outstanding.

TS SOAR study 

For the past few years at the TS conference we’ve been joined by Professor Skuse and his team from Great Ormond Street Hospital Institute of Health. They been conducting research into the wellbeing and behaviours of girls and ladies with Turner Syndrome. As G had recently turned 5, we are now eligible to take part. The beauty of this study is not only does it raise awareness of non-physical elements of TS, but it paves the way for future interventions that could help our girls in/with everyday life.

It’s all about the research and the knowledge. Knowledge is power!

In other news...
G didn't have to wait until she was 17 to get her first car, nope her Uncle surprised her for her fifth birthday. Not just any car either - a Mini. Now driving is quite a worry for us TS parents, especially knowing that spatial awareness can be problematic. However she’s managed to navigate herself around most obstacles. For now!

G had a hair cut, and didn't scream. This is big news. Are you spotting a theme today?! Still screams when her nails are cut though...

We are off to G's favourite holiday haunt soon. Lots of caravan fun with the family. Admittedly we all need a break, and we love caravans :) I'm not so sure how the rest of the site will cope with a babe who's up all night...nope not G, but H. Good job I have 5 years experience of a non-sleeper on my mumma CV!

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