H.I.E

Have you #HeardOfHIE?

Neonatal nursing units will often see instances of H.I.E (Hypoxic-Ischaemic Encephalopathy). H.I.E is a lack of oxygen and blood flow to the brain, which can occur before, during or after labour.

It affects approximately 3-4 in 1,000 babies in the UK each year (correlates to up to 50 babies a week across the UK), and can cause injury to the brain, with varying levels of severity, many of whom have been left with disabilities, learning difficulties and neurodiversities.

H.I.E can cause injury to the brain.  The severity of this can vary greatly.  H.I.E. has a grading scale (grade 1 which is mild, to grade 3 which is severe).  The grade of H.I.E. is determined by looking at a variety of factors such as whether there are seizures, the level of consciousness, posture, tone, reflexes etc.  Tests are often done at an early stage to determine the extent of any brain injury.

There are many different causes of H.I.E.  Some of the causes (but not all) are:

  • Placental abruption
  • Umbilical cord prolapse
  • Uterine rupture
  • Shoulder dystocia
  • Maternal blood clotting disorders
  • Trauma during delivery
  • Sudden unexpected postnatal collapse (SUPC)

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. If you consider that in 2022 there were 605,479 live births in England and Wales (Office for National Statistics) then potentially up to 50 babies a week are experiencing a H.I.E. event.

Some of the conditions that children have as a result of H.I.E. include (but are not limited to); Cerebral Palsy, Epilepsy, Dystonia, swallowing difficulties, oxygen dependence, speech difficulties, learning difficulties etc.  This also doesn’t take into account the traumatic effect the event has on a family, both from their often traumatic and difficult birth stories, and having to come to terms with the long-term disabilities the event can cause.

Peeps is a charity set up to support families touched by H.I.E across the UK.

Sadly, not all H.I.E. affected babies survive, and therefore Peeps can help with specialist bereavement support, as well as Sulley’s fund to help bereaved families.

The charity Peeps was set up in 2018 by parents Sarah and Steve Land, after the birth of their daughter, with the aim of ensuring that no family experiencing H.I.E. will feel alone.

Peeps provides access to counselling and trauma therapy, funding for specialist equipment and brings the H.I.E. community together through a range of on-line and in-person events ranging from information sessions, friendly ‘lets chat’ virtual sessions, to infant massage groups and in person meets (PEEPS together).  Last year, it arranged and funded over 400 hours of counselling and trauma therapy, sent out over 400 free parent information packs and organised its first ever fully accessible, subsidised holiday for families.

The support Peeps provides to families includes:

  • Free parent packs for neonatal units and specialist healthcare providers to share with families
  • Website with information and resources (with accessibility toolbar)
  • 1-1 peer support from volunteers with lived experience of H.I.E.(mums, dads and grandparents), and fully funded counselling / trauma therapy
  • Online support and information ‘let’s chat’ sessions, on a variety of topics relating to H.I.E.
  • Little HIEroes private Facebook group and WhatsApp for families
  • Closed Facebook group and WhatsApp for Dads
  • Dedicated Sulley’s Fund – for families who have experienced loss through H.I.E.
  • Closed Facebook group for bereaved families
  • Peeps Together events (family meet-ups) at accessible venues across the UK

In addition, training and support with various healthcare organisations, universities, training programs and other support services are given both in person and online to help raise awareness of H.I.E., and the impact it has on families and the community.

“The world of H.I.E. can be scary and challenging.  We want to offer a safe space, where people feel held and supported on their journey,” says co-founder Sarah Land.

The charity works closely with Neonatal Intensive Care Units, Hospital, and other specialist healthcare providers across the UK, providing free parent packs, posters and leaflets (translations available) that can be shared with parents.  Healthcare professionals can request packs for their unit/services here.

Units can also make referrals to Peeps for additional support, via a referral form on the Peeps website.

“The support of Neonatal Intensive Care Units is invaluable in helping ensure families starting out on their H.I.E. journey have access to information and support from the earliest opportunity,” says co-founder Sarah Land.

“Our vision is that every person in the UK touched by H.I.E. can access appropriate support.  We want to raise awareness of H.I.E. and ensure people know what it is and how we can help,” says Sarah Land.

For more information visit the Peeps H.I.E website.

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