HIE Grade 3.

Perinatal asphyxia, more appropriately known as hypoxic-ischemic encephalopathy (HIE), is characterised by clinical and laboratory evidence of acute or subacute brain injury due to asphyxia. The primary causes of this condition are systemic hypoxemia and/or reduced cerebral blood flow (CBF).  At Snowdrop we see many children who have suffered HIE.  It is graded in rank of severity, grade 3 being the most severe.

Today we welcomed back a 23 month old little girl for her 5th assessment. She had suffered an HIE grade 3, which is severe and I first saw her when she was just 6 weeks old. Since that time, she has come along wonderfully and it was great to see her walk into Snowdrop today for the first time. She is now well ahead of her age level in visual cognition and auditory cognition, (30 months and 40 months respectively), her language is age appropriate in that she is now putting two words together in what is known as 'telegraphic speech' and her social development is also age appropriate. The only problems which remain are use of the left hand, which is coming along nicely and refinement of her walking, which as she has only been walking for a few weeks, may come naturally and will in any case continue to improve as we improve tactile performance in the left side limbs. Well done folks, I don't need to see you for a year! (we will keep in touch though in the meantime).

If you need to contact Snowdrop, you can do so at info@snowdrop.cc

Meningitis and Hydrocephalus.

Today's assessment was on of the most amazing we have hosted.  It was with a 20 month old little boy and his family. He has been on the programme for 16 months and this was his fourth assessment. 

His background is a complex one.  In his Mum's own words in her first email to me.

"My identical twin boys were born 8/3/2016, 12 weeks early. ------ had fluid on the brain, a brain bleed on both sides, ventriculitis, and both twins contracted ecoli bacterial meningitis at 8 days old. ------- nearly died, he was having bad seizures, so much that his body was jerking off the bed (------- wasn't as sick) we were told there would be long term effects of this meningitis as he was so sick.

Unfortunately ------ got meningitis another TWO times. He's had an MRI which showed extensive brain damage and unfortunately has had to have a shunt fitted this week as the third bout of meningitis finally cleared up and he was well enough for surgery. The hydrocephalus has been very severe and neurosurgeon mentioned more brain damage since the last MRI.

I got talking to a mum of a little baby called ------- from York last night, we are at Leeds hospital together. She mentioned Snowdrop and I've been reading your website.
------- still not been discharged from hospital and yesterday started twitching down one side of his body again which he always did everytime he had meningitis, but part of me wonders if it's cerebral palsy or from the brain damage. We are waiting for neurology to come review him. But the hospital aren't being very open about his brain damage as I understand they can't say how it's going to effect him, but there is something clearly wrong. We don't even know if he can see or hear. He just states vacantly. The hospital describe him as a very angry as unsettled baby, he settled yesterday when I put his twin in his cot with him and actually looked directly at him.

We don't think we would be able to get to Devon having twins and a four year old. But we are very interested in the snowdrop programme for ------. I just wondered if you could advise me as to what to do next?

I know ------- is a very complex case but that's the basics of his history in his short 13 week life so far!"
In short, he was in a sorry state with a prognosis which was savage, the little one was going nowhere. Today, after 16 months on the programme, he walked into the assessment room and is at age level in every area of development. In fact today I graduated him from the programme, - he no longer really needs it! Of course we will keep a 'monitoring eye' on his progress, just in case an issue raises it's head, but I'm sure it won't. Not a bad start to the week! Well done to mum, dad, big sister and twin brother, - together we rescued him!

Reducing Baby Brain Injuries.

A very interesting report from the BBC this morning concerning the rates of brain injuries sustained by babies in the UK during labour.  This report really resonated with me because 30 years ago my own son was born with severe brain injuries partly due to a foetal heart trace showing severe distress, not being monitored correctly and therefore not acted upon.

As I say, my son's birth was 30 years ago and I was aware of other families at the time who's children suffered similarly.  Although there was a great deal of publicity at the time surrounding my son's injuries and we knew from the lawyers who successfully sued the North Staffordshire Health Authority on our behalf that the medical and nursing professions were aware of these problems nationwide, it seems that it has taken until now, with God only knows how many children's lives decimated, for someone to do something about it!

As readers of this blog will know, I run Snowdrop for Brain Injured Children, - a child development agency who provides programmes of developmental stimulation for brain injured children.  We have been operating now for 10 years and during that time I have heard story after story from families who say that their baby's heart monitor was either ignored, or not interpreted correctly.  This amounts to hundreds of children that I can account for where parents have legitimate questions to ask in this area.

According to the BBC's report, the major issues are "problems with accurate assessment of foetal wellbeing during labour and consistent issues with staff understanding and processing of complex situations, including interpreting baby heart-rate patterns (on traces from CTG machines)"

This is a shocking situation in it's own right, but the fact that I can account for this situation being prevalent for the past 30 years makes it even more disturbing.  Children's lives are being decimated and therefore so are the lives of their parents and wider family.  Let's hope that this report brings an end to the situation, - but I very much doubt it!

How Repetition Changes the Structure of the Brain.

The more we repeat something, the better we get at it; this much is uncontroversial.  But that doesn’t mean it isn’t worth examining. The connection between repeating an action or a skill and then improving because of that repetition is a concept that is so natural and intuitive, so well accepted as common knowledge, that we often fail to appreciate the fascinating mechanics behind the process of skill acquisition.  It follows the old adage, 'practice makes perfect!'

On the most basic level, learning a new skill or improving a skill involves changes in the brain.  There are a few different ways that our brains adapt to picking up new skills and changing environmental conditions.  The first involves a rewiring of the networks of neurons in the brain.  Each skill or action that a child performs involves the activation of neural pathways.  In Norman Doidge’s book on neuroplasticity, The Brain That Changes Itself, Dr. Alvaro Pascual-Leone has a beautiful little analogy for the way that these pathways relate to skilled performance (Page 209):

"The plastic brain is like a snowy hill in winter.  Aspects of that hill–the slope, the rocks, the consistency of the snow–are, like our genes, a given.  When we slide down on a sled, we can steer it and will end up at the bottom of the hill by following a path determined both by how we steer and the characteristics of the hill.  Where exactly we will end up is hard to predict because there are so many factors in play." “But,” Pascual-Leone says, “what will definitely happen the second time you take the slope down is that you will more likely than not find yourself somewhere or another that is related to the path you took the first time.  It won’t be exactly that path, but it will be closer to that one than any other.  And if you spend your entire afternoon sledding down, walking up, sledding down, at the end you will have some paths that have been used a lot, some that have been used very little.”

Every action we perform, every new skill we pick up, involves beating down and refining a kind of neural trail.  We are making real changes in the brain.  And our brains are remarkably efficient to change in response to training.  In one study, video game players who played the dark, fast-moving action-based game Call of Duty for 9 weeks were not only better at the game, but were able to see significantly more shades of gray, post-training, than a group who played a simulation strategy game that did not exercise those skills.

Over a longer time span, it is also possible to see significant structural changes in the brain.  For example, the brain area associated with motor control of the right index finger in blind subjects who are braille readers has been found to be significantly larger than that of sighted individuals.  Similarly, a famous study of london cabbies, famous for their ability to navigate the twisting streets of the city, found that they had greater brain volume in the hippocampus, a structure heavily involved in both memory and spatial navigation, than bus drivers who followed a predefined route every day.

With respect to the brains of children who have developmental disabilities, the brain injuries or abnormalities they suffer might slow that response to training down a little, but the response is still possible.  

Evidence for neuroplasticity abounds, - from the structural differences which have been found between experienced athletes and novices, through to the Chinese study of expert divers which found increased gray matter volume in brain areas associated with skilled motor control.  Along the same lines, an Australian study of skilled racket-sport players found that brain areas associated with the racket arm were larger than in a matched group of non-athletes.  The evidence is irrefutable! 

The overarching theme here is that the brain is malleable–it changes with training.  It is an interesting concept to keep in mind, especially with respect to brain injured children and it is the overarching principle of the Snowdrop programme.  

It’s easy and natural to think about training in terms of muscles, the body and physical skills.  But every new skill that a child learns is accompanied also by neural changes that may be harder to see, but are equally important.

If you would like more information about the Snowdrop programme, go to our website at http://www.snowdrop.cc or email us at andrew@snowdrop.cc


Doidge, N.  The Brain that Changes itself.  Viking Press.  2007

Zuo, Y. et al. (2012). Spine tuning. Finding physical evidence of how practice rewires the brain. http://blogs.scientificamerican.com/observations/2012/04/16/spine-tuning-finding-physical-evidence-of-how-practice-rewires-the-brain/

Max's Story.

This post was written a couple of days ago by a mum from Australia who has a little boy on our distance programme.  Max has been on the Snowdrop programme for around 12 months and in that time he has made incredible progress.  Although your kind words are much appreciated Faith, you are the real star here, having worked incessantly to rescue your little boy from the depths of brain injury.

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Wake up Sleepyhead

 

I started writing this blog, about 2 weeks after Max's stroke. A good friend suggested it might be cathartic to write about our experiences. It's also been a good way to disseminate information everyone wanted to know. In the first few weeks of writing, I wrote furiously to get all the facts down on paper before I forgot them. My early posts are pretty crappy and straight to the point. Over time, I've written a few 'flashback' posts, and talked about certain events in more detail. Which is exactly what this post is going to be....

Max spent about 2 days officially, in a medically induced coma. It was the only way, they could stop the seizures which was causing his brain to dangerously swell. It probably sounds strange, but I was grateful for those 2 comatose days. It gave me a chance to process everything which was going on. Every medical professional I spoke to in those 2 days, uttered the same phrase "we'll know more about his prognosis, once he's out of the coma". I was in no hurry for him to wake up, I was petrified of the reality we were going to face. 

In those 2 days, I sat with him, with every intention of reading him stories and singing his favourite songs. I never did either of those things because I couldn't find the strength. Instead, I cleaned his eyes when they got mucky, I cleaned his mouth and kept his lips moist. Occasionally, I changed his nappy, although there wasn't much point because he had a catheter and his bowels were essentially 'paralyzed'. 

The thing I did most of all, during those days, was think. I had no idea who my son would be when he woke up. By that stage, we knew he had permanent brain damage but didn't know how it would affect him. Would he be permanently paralyzed? Would he be dependent on me for the rest of his life? Would he be mentally handicapped? Would he ever do those 'normal' things that other parents take for granted? I feel a little ashamed, but the one thought which had the most air time, was 'I never signed up for this sh*t'.

Coming out of a coma is nothing like you see in the movies. On TV, the (beautifully made up) comatose patients eyelids flutter before they slowly open, they look at the person sitting lovingly by their bedside and stutter "wh-wh-at happened?". 

In reality, the process is very long and extremely tedious. For 2 days, I'd basically seen, no signs of life from my baby. No twitching, no eyelid flutters, no response to anything. 100% of his breathing was done by a life support machine. Slowly, we started to see little twitches, his eyes started moving behind closed eyelids and every now and then, he breathed for himself. His eyes didn't flutter open like they do in the movies. They opened millimeter by millimeter, over the course of 24 hours. Once they were open, his gaze was vacant. 

There's one particular photo, I look at fairly often which tells the story of how far we've come since last June. It was taken by my mother on the day Max started coming out of the coma. I don't think I took any photos on that day, because it hurt like hell. When I think back to that day, I still feel the stabbing pain in my heart. 




It took days, maybe even weeks for the Thiopental (aka Coma drug), to wash out of his body. The doctors explained in laymans terms, Thiopental literally soaks into every fat and muscle cell of the body. It was going to take his little body awhile to rid itself of the drug (Incidentally, I later discovered, Thiopental is the first of the 3 lethal injections given in executions- I'm glad I didn't know that at the time). 

Even after the Thiopental and pain killers were out of his system, Max was still a space cadet. He would've been happy lying in his cot all day and staring at the wall. Not once did I let him do that. When Max was awake, Max's brain was being stimulated somehow. We played music, read stories and took him for walks around the hospital. I was the crazy mummy, who took her baby to the Starlight room and joined in the art groups. Despite all of this, he was still pretty vague. I could bang saucepans only meters away from him and he wouldn't respond. Yet, we knew, his hearing was perfect. 




After months of (slightly obsessive) researching, I started Max on the Snowdrop Program. He literally 'woke up' after only one day of the program. On Monday, I could carry him into the shops easy peasy. On Tuesday, he was a humanoid Octopus who tried to grab everything off the shelves. 

Looking at him now, it's almost impossible to believe he's the same child. Check out these recent pictures, he is alert, hyperactive and incredibly mischievous. 




















From a physical perspective, we still have a long way to go, but that's a whole other post. I have days, when the cheeky little sod is driving me batty and I have to remind myself of how far he's come. There aren't enough ways to say thank you to Andrew and the Snowdrop Program. It's my greatest wish, for us to travel to the UK, because there's one thing I really need to say to him in person. "Thank you for bringing my son back". 

This isn't a sponsored post but for anyone wanting to know more about the program, here's the link- 

Snowdrop for Brain Injured Children

Brain Plasticity in Action, (on a trampoline)!

This young man is just 19 months old.   When he was 6 weeks of age he suffered a massive stroke which destroyed the left side of his brain.  His doctors told his mum that as a consequence he would never be able to use his right side limbs, which meant he would never crawl, never walk, and because language functions are situated in the left hemisphere, he would never understand or produce spoken language.  His mum refused to accept this and after many months of despair, she found Snowdrop via an internet search.  We instituted a programme of neuro-developmental stimulation, which he has been following for just 1 year.  The results have been astonishing and he did crawl, he does walk, (and run) and he most certainly does talk!  Here we see him coordinating both legs in order to enjoy the trampoline.  This young man is proof positive that not only can we stimulate brain plasticity, we can successfully direct it down a developmental pathway and thus restore the functions of children who have suffered brain injury.

 is trampolining using both legs in coordinated style! Go Max!