Downs With Ups

So, what exactly happened to Jane when she had a stroke? The neurological team needed to gather a wide range of data to be able to answer that, and after an astonishing number of tests at the Austin Hospital, Jane and I were able to learn the specific details of her case.

It seems that Jane’s carotid arteries are narrow, particularly where they enter her brain. This means her brain is being deprived of sufficient blood. Her brain however, in a desperate attempt to collect as much of that precious fluid, miraculously created hundreds, if not thousands of tiny blood vessels to compensate for this.

As I wrote in my previous post, (https://downswithups.com/moyamoya-and-down-syndrome/), the term ‘moya moya’ means ‘puff of smoke’in Japanese and it certainly looks like that on the scans. You can see it on the photo from my previous post.

(Incidentally, it’s not just Jane’s carotid arteries that are narrow. She has this condition in most of her arteries from head to toes. Again, this is typical for some people who have Down syndrome.)

Jane’s recent stroke came about not by a blocked artery, but from moya moya and an insufficient blood supply to her brain. The scans showed several scarred areas indicating she’s had smaller strokes in the past. I can think of two occasions when she was at secondary school when we received complaints that she wouldn’t move when asked – one time was in the school yard and the bell had gone; it was assumed she was just being obstinate. The second time was at a school camp and again she was being labelled a troublemaker when she froze to the spot.

This time, the stroke happened right in front of me. She couldn’t speak and simply looked at me with a blank face. As I watched my daughter trying to answer my questions, a stroke was obliterating almost a quarter of her brain, on the left-hand side. She later told me she was very scared and worried.

The lasting affect of the stroke included the loss of her:

• peripheral vision in her right eye, which means she’s constantly bumping into things;
• co-ordination of her right foot and ankle, which means she’s super cautious when walking, let alone running as her foot sticks out at a 45-degree angle;
• control over her right hand and its ability to grasp objects, which means she’s unable to write, hold a toothbrush or even cutlery;
• words;
• ability to follow instructions;
• numeracy; and
• knowledge of colours.

I keep repeating to myself, ‘she has a young brain’ to give me some reassurance that this laundry list of damages will decrease as time moves on and with assistance from rehabilitation specialists – and indeed it has.