Our warrior this month is Oliver who was diagnosed with a birth injury called HIE – hypoxaemic ischaemic encephalopathy (lack of oxygen – restricted blood flow – affecting the brain). HIE is one of the major underlying causes of Infantile spasms. Half of children who have HIE which involves neonatal seizures, damage to certain areas of the brain on MRI and abnormal muscle tone will go on to develop infantile spasms. It’s critical that parents with a child with HIE are told what to look out for to ensure prompt treatment.
Oliver’s story is written by his mum, Kerry.
Hi! This is Oliver, he is 6 months old and what an interesting 6 months he’s had!
Oliver was born 17 days earlier then ‘planned’, he just couldn’t wait to get out and meet everybody, however his birthday was a blessing and a nightmare rolled into one.
I ended up having an emergency C section, because he had no fluid left in his sac and was essentially suffocating, and by the time the doctors got him out he was terribly poorly and he literally survived death twice.
He needed bloods, transfusions and multiple MRI and CT scans, which is no easy task when you’re only 5lb 4oz!
Oliver was whisked to Preston NICU where he stayed for five weeks, then back to Blackpool for another week. When Oliver was born and sent to Preston he immediately went in a CFM (cerebral function monitoring) machine and that picked up seizure activity (quite a lot actually!) so he was put on keppra and phenobarbital, but as he was sedated for the few couple of weeks it was very difficult to see any physical seizures.
Oliver currently has 4 diagnoses
• HIE grade 3
• Intracranial haemorrhage ( I suffered 8 bleeds on my brain around the time of birth)
• Infantile Spasms
• hearing loss of both ears
A month later we are off the steroids (thankfully!) and still remain in the keppra and vigabatrin and all things so far look good, to the point his consultant would like to see him in 4 months time and not a few weeks! Oliver was NG (nasogastric) tube fed, but I just knew he could take a bottle, so we started small and pushed the doctors from there, and now Oliver full time orally fed!
The doctors say there’s a strong possibility that Oliver would develop cerebral palsy as he grows, and they also tell us that he will need a lot of help and support developmentally too, as he’s going to be a little behind.
But we’re not worried, because we have come this far and together my little family can achieve anything!
Oliver has a big sister who he adores! She’s so patient with him and is always around for a snuggle – and they do love their snuggles together!
Life has been a whirlwind of hospital appointments and new information to take on board but I come from a strong line of fighters!!
That’s why Oliver is a little warrior because he’s survived.