Monday, November 22, 2010

There is a name for this...

I should mention that when we left the hospital after Joshua was born, I didn't know there was a name for this.  I knew he'd had seizures, and I knew he was brain damaged.  I knew it was caused by a lack of oxygen.  They told me that they didn't think it was from during the birth, but rather some time during the pregnancy, based on some of the different levels in his body.  They told me that despite all the monitoring they do in pregnancy these days, sometimes a baby can be compromised without us knowing.  I tried searching for things on Google looking for information about this...  things about seizures and things about brain damage.  But my searches were pretty useless.  I was finding information, but none of it was really what happened to Joshua.  It wasn't until Josie, my midwife asked me if I'd gotten a copy of Joshua's hospital discharge papers.  She had been sent a copy from the hospital.  I hadn't received a copy and to tell  you the truth, I never even thought about anything like that.  So Josie arranged a copy for me.  And there it was.
Principal Diagnosis:  
Hypoxic Ischaemic Encephalopathy Grade II.  
Other Diagnoses/Co-morbidities:  
1. Severe Hypoglycaemia 
2. Seizures  

So, there was a name for this!  The discharge papers also had the results of his MRI.

There is extensive restriction of diffusion within the peripheral brain throughout the cerebral hemisphere with relative sparing of the temporo-parietal regions.  There is also restricted diffusion within the left posterior thalamus.  There is increased signal within the cortex in teh same regions as the restricted diffusion as well as foci of reduced signal in the right occipital region consistent with haemosiderin deposition.  Appearances are consistent with extensive pseudolaminar cortical necrosis pattern of Hypoxic Ischaemic Encephalopathy.  There is a degree of moulding visible posterior to the vertex as well as a small scalp haematoma.  No extra-axial haemorrhage is present.  Ventricular calibre and position are normal.  The basal cisterns are preserved.

Holy cow!  I finally had some things to Google!!  Joshua was about 9 weeks old at this point and I was only just finding out what was actually wrong with him.
I googled Hypoxic Ischaemic Encephalopathy and while I found there was not a great deal of information, there was an one article I found, and oh my goodness, this is what happened to my Joshua.  Unlike all my other searches that didn't really turn up anything that was really on the money, this was actually what happened to us.  The article is here if anybody is interested.  It has a lot of medical jargon, but it is the best explanation I've found online.

I also tried googling all of the things in his MRI results....  and basically, the conclusion I came to from that, was that his entire brain was F**ked.

Now that I knew what his diagnosis was, it struck me that I probably wasn't the only person in the world to ever have this happen to their baby.  And so, I set out to find other parents in this situation.  What do you know...  I found a support group on Yahoo for parents with children that have HIE.  There is even a facebook page for HIE!  And perhaps the best thing I came across, was a blog written by another mother.  And, she was Australian!  I read her blog and cried my eyes out.  Somebody understands me!  Somebody knows how this feels!  I had to contact her...  She gave me some great advice and perhaps the most inspiring thing of all is that her beautiful daughter Sophie, who has just turned 2 years old, is completely 100% fine.  It is not realistic to expect this for everyone with a HIE diagnosis, and many children are affected very severely, but it is wonderful to hear some positive stories too!
If you would like to see Claire's blog about Sophie, then this is the link: Sophie's Journey

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