What Is Hypoxic-Ischaemic Encephalopathy (HIE)? | Peeps HIE Charity

What Is Hypoxic-Ischaemic Encephalopathy (H.I.E.)?

Hypoxic-Ischaemic Encephalopathy (H.I.E.) is where there is a lack of oxygen and blood flow to the brain. It can occur before, during, or shortly after labour. It can happen in older children too. You may also hear the term “asphyxia” or “birth asphyxia”. These mean the same thing.

H.I.E. can cause injury to the brain. The severity of this can vary greatly. You may hear H.I.E. and a grade from 1 which is mild to 3 which is severe. (See our jargon buster for more information on the Sarnat Scale that the grading comes from).

Tests are often done at an early stage to determine the extent of any brain injury. One thing to remember is that babies have a tendency to do their own thing, despite what any results may suggest!

It’s also important to highlight that parents, as well as the wider family, can be affected by a HIE event, regardless of the outcome. H.I.E. events are often completely unexpected and can be traumatic. Your experience of H.I.E. may be different to others you read about. Your feelings are always valid, and there is support there for you if or when you need it.

The time after a H.I.E. event has been described by parents as a rollercoaster. There will be highs and lows. Certain situations may trigger certain feelings for you, sometimes when least expected. Remember you’re not on your own. Talking about how you feel can be helpful. That might be to your partner, a family member or friend, or a healthcare professional.

What causes H.I.E?

There are many different causes of H.I.E.

Some causes are:

There are lots of other possible causes (too many to list here). It is always best to seek a medical opinion if further details are needed.

H.I.E. doesn’t seem to be talked about much in the UK, but unfortunately it isn’t uncommon. It affects 3-4 in every 1000 babies. If you consider that last year there were 640,370 live births in England and Wales (Office for National Statistics) then potentially 50 babies a week are experiencing a H.I.E. event.

Peeps is raising awareness, making sure that people affected by it can get the support needed.

How is H.I.E. treated?

There isn’t, as yet, a cure for H.I.E. Babies who experience moderate to severe H.I.E. will in most cases receive “cooling” treatment. The full name for this is therapeutic hypothermia. It is where the baby’s temperature is lowered for 72 hours, using cooling mats or jackets. Cooling has to be started as soon as possible, and within the first 5-6 hours of the H.I.E. event. Cooling has been shown to limit the extent of injury to the brain.

It’s not always possible to hold your baby while they are being cooled. This can be hard for parents. There are things you can still do though; talk or sing to them (don’t worry if anyone else can hear you!) or gently stroke their hand, giving reassurance that you are there.

They may also be given medication to help. Some H.I.E. events cause seizure activity for example. Your doctor or nurse will be able to explain what the best treatment is, and talk you through a plan.

Will my baby have long term effects from their H.I.E. event?

This is one of the questions that, understandably, many parents want the answers to. It’s so hard to predict though. Some babies will be unaffected by their H.I.E. event. Others may be diagnosed later on in life with conditions, such as cerebral palsy, as a result. This can feel very frightening, especially if your baby is only young. Try not to jump too far ahead (easier said than done, we know). Take each day, or hour, at a time, and enjoy your baby for the amazing little person they are. Things can and do change. Listen to what the doctors say, and hold on to hope.

If you are struggling in any way, or just want a chat with a parent who has also experienced H.I.E., then please don’t hesitate to get in touch. There will always be a kind ear and lots of gentle support.

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Peeps on Twitter

A little light listening for a Saturday - a beautiful song that was gifted to Peeps by Liz explaining what H.I.E. is and sharing just some of the gorgeous families we have the privilege of being alongside #HeardOfHIE 🌻

#Neonatale #seizures and #outcomes!
- @HIE the most frequent cause of seizures, but prognosis of neonatal-onset #epilepsies was worse.
- Status epilepticus: the most predictive for adverse outcomes
@EURJPN @neo_twiter @HopeforHIE

https://www.ejpn-journal.com/article/S1090-3798(24)00007-2/abstract

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There’s time to join in if you want to be part of Team Peeps 🌻…

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