HIE Awareness Day

Emma Louise Cheetham by Emma Louise Cheetham Additional Needs

Emma Louise Cheetham

Emma Louise Cheetham

I live in Stockport, UK. I have Borderline Personality Disorder and Generalised Anxiety Disorder. After years of therapy and getting back on my fee...

Saturday 4th April marks HIE Awareness Day. It’s only the second year there has been a day dedicated to raising awareness for HIE. If that doesn’t tell you that this condition is scarcely known about, then nothing will.

HIE is devastating. Thoroughly devastating.

Even that is putting it mildly. Chances are, if you or somebody you know hasn’t been affected by Hypoxic Ischemic Encephalopathy, you’ve never even heard of it.

HIE usually affects babies shortly before, during or just after birth but some cases of HIE can occur later into childhood as a result of a near SIDS event, near drowning or cardiac arrest. HIE shortly before, during or after birth can be caused by uterine rupture, shoulder dystocia, placental abruption or as in our case sometimes there is no known reason.

It’s hard to imagine that you can go right the way through a pregnancy carrying a perfectly healthy baby for it all to be so cruelly snatched away just before you cross the finishing line. But it’s true, it’s very real, it happens. 

HIE sneaks up on unsuspecting families. It rips away any idea of normality. It replaces the expectations with fear, anguish and heartache. It takes away your perfectly healthy child and replaces them with a great big question mark. It sometimes leaves families wondering whether their child will survive the initial insult.

If they do survive it’ll leave them wondering how severely affected their child will be following their injury. They will have an MRI scan. That may tell them there’s no evidence of any damage. It may tell them their injury is utterly catastrophic. Or it could tell them anything in between.

But then the doctor tells you that the results of the MRI scan mean nothing. Nothing and nobody can predict how the future will be. Nobody can assure you that your child will be okay. The child with a slight mark on their MRI scan may be severely affected, not able to walk or talk. The child with damage in all areas of their brain may be completely and entirely unaffected. 

“Wait and see”

Some families are sent home with NG tubes. Learning how to take an aspirate and check the tube hasn’t moved into the lungs. Some families are sent home with suction machines to manage their children’s secretions. Some families are sent home with a tracheostomy, some with home oxygen, many with medication to keep their child well. Some babies don’t cry, some never stop crying. Some children have seizures. Some are stiff. Some are floppy. Some can’t see. Some can’t hear.

The first year is the most torturous. You watch and wait for seizures. You put your child through endless therapies in the hope that it will equip them with the tools they’ll need to meet those milestones and to give them the best possible chance at some sort of normality.

For some it will work, for some it won’t.

Some children sadly don’t survive that first year. Many do but by the time that first year has passed, the extent of their injury has usually become apparent. That’s not to say if your child seems completely unaffected that they’re out of the woods. Some children don’t show any issues until much later into childhood. 

Some children will receive further diagnoses as a result of their injury as time goes on. Cerebral Palsy, Epilepsy, Sensory Processing Disorder, Dystonia to name but a few.

By the end of that first year though, for many something has begun to change. Many families have started to process and accept what has happened to them and their children. They’ve learned how to advocate for children in the best possible way. They’ve learned that whilst this life is indeed challenging and difficult, it is also rewarding and incredibly beautiful.

The child that has been labelled with a severe brain injury and not expected to achieve much may have started to hit milestones. They may be late but that doesn’t matter. These kids are full of surprises. Some of them stare death in the face and bounce back within weeks, shocking everybody along the way. The child that can’t see may start fixing and following. The child that can’t hear may startle at a loud bang. 

The brain is incredibly malleable. Neuroplasticity occurs from the offset. The brain forms new pathways around the damage and as time goes on, some children will defy the odds stacked heavily at their door. Nobody fully understands the brain and how it works, it’s a truly remarkable organ. 

One of the most incredible parts of this journey is the community that you are surrounded by.

Whilst there may not be millions of people affected by HIE, those that are love hard, care greatly and have a real passion to support families just like theirs. There’s no reason to feel isolated or alone on this difficult and usually unexpected journey. There is a whole world of support out there, an entire army of people who have been there, who have lived it and have a huge wealth of knowledge that is incomparable.

They’ve been in that place of complete hopelessness. They’ve faced fear head on and they’ve wondered how they will ever get through. They’ve lived through uncertainty, intense worry and pain as they’ve watched their child struggle.

So, on Saturday 4th April, give a thought to those families who are living this devastating, challenging and at times frustrating life. Don’t pity them, for their children are equally as amazing as the next in their very own right. Just keep them in your thoughts and if you ever find yourself meeting a family who have been directly affected by HIE, be kind to them.

They may look like they have it together entirely but looks can be deceiving. We’re winging it day by day, some days are better than others, some days it takes all our energy to drag ourselves out of bed.

HIE is hard work.

But one thing I’ve learnt is that these kids are truly amazing, they are the most resilient little warriors who do not let their struggles define them.

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