Premature Birth, - Brain Haemorrhage, - Ventriculitis, - Meningitis.

Today we welcomed a two and a half year old little boy back for his 5th assessment. He had been born 12 weeks early with fluid on the brain, a brain bleed on both sides, ventriculitis, and he contracted ecoli bacterial meningitis at 8 days old. He nearly died, he was having bad seizures, so much that his body was jerking off the bed and his mum and dad were told there would be long term effects of this meningitis as he was so sick. Unfortunately he got meningitis another TWO times. He had an MRI which showed brain damage and unfortunately he had to have a shunt fitted as the third bout of meningitis finally cleared up. The hydrocephalus was very severe and neurosurgeon mentioned more brain damage. As you may imagine, the prognosis for someone who has been through that level of neurological trauma is not good. So today was a joyous day because after 2 years on the programme we were able to discharge him as completely well! He now has the developmental profile which someone of his age who is uninjured would have and he is hitting all his milestones. He is indistinguishable from his twin brother. Well done to mum and dad, you rescued him!

Neonatal Arterial Stroke.

Many people associate strokes with age, but they might be surprised to learn that a great many young children suffer strokes.  Stroke happens in about 1 in 4,000 live births. The risk of stroke from birth through age 18 is almost 11 in 100,000 children per year.  So it is a great deal more common than one might imagine.

Today we met a nearly 3 year old little girl who has developmental delays due to a neonatal arterial stroke. She was absolutely delightful, just starting to walk and talk, mum and dad, as with all mums and dads have already performed wonders with her. Can't wait to get her started on the Snowdrop programme.

We have a few children on our programme who have suffered varying types of stroke and most of them are making good progress.  Let's hope this little girl follows in their footsteps.

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