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Raising awareness of HIE

HIE can result in lasting injury to the brain, with varying levels of severity

As an HR professional, I have supported many employees as they have navigated through difficult, childbirth-related situations that have understandably impacted their work.

In common with many other practitioners, I have come across employees who have had premature babies, children born with genetic conditions or who have experienced heartbreaking baby loss. 

But it was not until my own daughter was left with a brain injury following an hypoxic-ischaemic encephalopathy (HIE) incident at birth, that I fully understood the level of support that parents need when their pregnancies don’t go to plan.

Read more: How should employers support parents with a seriously ill child?

HIE is a lack of oxygen and blood flow to the brain, which can occur before, during or after labour. It can result in lasting injury to the brain, with varying levels of severity, and affects approximately three or four in every 1,000 babies in the UK each year; a higher incidence than many other well-know genetic conditions or diagnoses (such as Down syndrome or spina bifida). 

My family’s experience with HIE plunged us into confusing, frightening and unknown territory. As we tried to get to grips with the complexities of looking after a child who was tube fed, on oxygen and experiencing seizures, it seemed like no-one had heard of HIE or understood what it meant for our daughter. My eventual return to my HR role was anxiety inducing, trying to juggle work with finding specialist childcare, while also needing to take time off for frequent hospital appointments and admissions.

Read more: Caring for a disabled child while working: how HR can help

It was this bewildering experience that led to the establishment of Peeps, the charity I set up, and now manage, with my husband to raise awareness of HIE and ensure that affected families know where to turn for information and support and never feel alone. 

As we mark our sixth awareness day on 4 April, I am urging HR professionals to find out more about HIE, so that they are better prepared to support and signpost employees. 

Having a child with complex medical needs doesn’t mean that parents are unable to work – indeed many of them actively want to.  What it does mean, is that they need a little extra support to enable them to manage their working lives and continue to make a valuable contribution to their organisations. Here’s how HR can help: 

Ultimate flexibility: Access to flexible working, whether that is part-time, hybrid, or any other flexible model, is of course important. But it’s not just about the formal arrangements: employers need to show additional flexibility to parents on an ad hoc basis, to help them cover medical appointments, or in situations where specialist childcare arrangements break down. Most parents in this situation will go the extra mile to make up any time lost. 

Short notice/emergency leave: The life of a parent with a child who has a brain injury, or indeed any other kind of disability, is rarely predictable. Parents need to know that their manager will be supportive, and that they don’t need to feel guilty if they have to be absent from work at short notice to be with their child. Parents who can see their employer is doing its best to support them will likely be among your most loyal, committed employees. 

Sensitivity to triggers: First birthdays, pregnant colleagues, birth announcements, baby visits to the office – all of these can be triggering for parents whose pregnancies haven’t turned out to be the happy experience they predicted. Managers and colleagues need to be encouraged to show compassion and empathy to parents who may be experiencing difficult emotions. 

Mental health awareness: An HIE incident can be a traumatising experience for a family. Last year, Peeps arranged and funded over 400 hours of counselling and trauma therapy for parents. Families tell us how valuable this has been in helping them come to terms with their experience and equip themselves to cope with the challenging circumstances they find themselves in.   

Read more: Legal HR tips: Managing compassionate leave

One of the key aims of our #HeardOfHIE day is raising awareness among HR professionals, so they are equipped with knowledge, understanding and are ready to help employees.  Peeps is here to help,  and welcomes any enquiries from HR professionals or EAP providers who come across families they think might benefit from our support.  

By Sarah Land, co-founder and manager of the charity Peeps www.peeps-hie.org