Our April warrior – Oliver – infantile spasms as a result of HIE

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.

He had quite a few EEGs done, along with me sending in what feels like a thousand videos of ‘unusual’ baby movements (hands twitching motions, his eyes would roll to the top off his head often, he would jump like he had been startled, hiccups – daily if not a few times a day, and he would often zone out while having a bottle then come around and be very upset) it was then diagnosed as infantile spasms.

At four months he was put on prednisone (40mg daily) and vigabatrin (twice daily) for a month alongside the keppra (he came off the other med before he came home)

The prednisone unfortunately changed his mood massively and he stopped smiling / laughing or being interested in anything, but now after weaning off it he’s back to smiling and laughing and he is even trying to roll (although not successful yet!)

The mood changing in itself was extremely difficult because he just screamed at me all the time, and I felt completely powerless, it didn’t matter what I tried he just screamed, the only time he didn’t was in the bath (he loves that tub!)

We as a family has never heard of IS so when we got the diagnosis it felt like the floor had opened and we were about to finally crumble, but I did a little Facebook search and found the UKIST group and honestly it was such a relief, I mostly stayed a silent member but just reading people’s journeys/ stories/ advice and what not still now helps in leaps!

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.