This page has been developed primarily to help families understand more about  Hypoxic-Ischaemic Encephalopathy (HIE)  and where additional support and information can be found.

Hypoxic-ischaemic encephalopathy (HIE) is a lack of oxygen and/or blood flow getting to your baby during or just after the birthing process. HIE is also sometimes referred to as ‘asphyxia’ or ‘birth asphyxia’. HIE can affect all of your baby’s organs: the lungs, liver, heart, kidneys, and particularly the brain. Babies can be affected by HIE in different degrees commonly described as mild, moderate or severe.  

If your baby has been identified as having HIE, their treatment will depend on what level of symptoms they have. Some babies will be eligible for treatment, commonly referred to as ‘Cooling’. Cooling involves deliberately lowering a baby’s body temperature to around 33C for 72 hours.

Some babies will need to be transferred for ‘Cooling’  treatment to another Neonatal unit, please see the section  ‘Cooling in Neonatal Transport’ below for more information.

 

We recognise a diagnosis of HIE can be devastating and a very confusing time for families. In addition to the information provided by the hospital, the following resources have been put together to help sign post people to where additional information and support can be found.

 

Information leaflets available to families:

Bliss: HIE a guide for parents

PEEPs Parent info  Leaflet offering support for families

Organisations offering support for families affected by HIE:

PEEPS HIE Charity: Providing support to parents, families & friends of those affected by HIE and raising awareness of HIE.Follow Peeps on Twitter @PeepsHie

HIE Network Forum on Facebook

Hope for HIENew to HIE on Facebook 

The Rainbow Trust : Rainbow Trust supports families who have a child aged 0-18 years with a life threatening or terminal illness and need the bespoke support. the Rainbow Trust can be accessed via: Facebook, Twitter, Instagram, Pinterest, YouTube

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Information/ resources for families affected by HIE

BeBop  (Baby Brain Protection) website provides information and support for families and healthcare professionals on a broad range of conditions affecting the brain of premature and term newborn infants including HIE. the families page of the Bebop website provides information, support and stories for those affected by HIE.

Connect North West is the neonatal transport service for the NWNODN and one of the first neonatal transport teams in the UK to undertake active Cooling in transportBabies who require Cooling treatment for HIE will need to be cared for in one of the seven Neonatal Intensive Care Units (NICUs) across the network. Babies who require cooling but are born in a local neonatal unit (LNU), where long term cooling treatment isn’t available, will need to be transferred to a NICU by the specialist neonatal transport team, Connect North West.

If your baby needs to be transferred this will not usually mean a delay to starting treatment. Some LNUs have equipment  to initiate active Cooling whilst others will start passive cooling. Connect North West have a specialist transport incubator with all the equipment needed to start active cooling treatment. Occasionally where your baby may require additional specialist treatment for transfer, for example a different type of ventilation, cooling treatment may have to be commenced on arrival at the neonatal intensive care unit. The team will explain to you the process of starting the cooling treatment and your baby’s transfer.

The transport team will ensure your baby receives the best possible care during the transfer.

After completion of the cooling treatment at the NICU your baby may be transferred back to your local neonatal unit before discharge home but your baby’s nurse and consultant will discuss this with you.

Picture of the Cooling transport Incubator used by the neonatal transport team Connect North West:

Cooling/ Therapeutic Hypothermia: deliberate reduction an infant’s body temperature to around 33C for 72 hours.

Hypoxic-ischaemic encephalopathy (HIE)

Birth Asphyxia/ Asphyxia (as-FIX-ee-uh) means lack of oxygen and blood flow to the brain. Birth asphyxia happens when a baby’s brain and other organs do not get enough oxygen and nutrients before, during or right after birth. This can happen without anyone knowing. Without oxygen and nutrients, cells cannot work properly. Waste products (acids) build up in the cells and cause damage.