Charity Focus What is HIE? HIE stands for hypoxic-ischaemic encephalopathy, and put simply, is a lack of oxygen to the brain before, during, or shortly after labour (it can happen in older children too). This can cause injury, and the severity of this can vary greatly. HIE isn’t really that well known, but it affects 3-4 in every 1000 babies. Why did we start PEEPS? Sarah and Steve set up PEEPS in 2018 to raise awareness of HIE and provide support to parents and their children. Here, Sarah explains why they established PEEPS: “We found ourselves in the world of HIE when our daughter was born in March 2015 – she stopped breathing
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shortly after birth and, without any warning, our NICU journey began. Neither of us had heard of HIE before, none of our friends or family had, and to be honest, it was a scary time. I googled it (going against the advice of all the nurses of course!), and luckily found a Facebook forum for families. If it hadn’t been for that group and the advice and information offered by other mums and dads, I think Steve and I might still have been wondering what on earth was going on! So, we wanted to change things a bit, reach out to families in the early days, and bring the information to them, rather than them having to look for it.” Every HIE journey is going to be
different, but there can be similarities and celebrations, as well as the uncertainties and worrying times. What does PEEPS do? • Provide information – we have leaflets to share with NICUs, so that a family who are starting out on their journey have access to information and support. We can also provide “parent packs”, with some items which may help and offer a little comfort during those early days and weeks • Buddy support – if a HIE parent thinks it may be helpful to meet up with a mum or dad who has been through the same, or similar experience, then we can put them in touch with a “buddy” – we’ll even throw a coffee or two in for them! We understand meeting up, may feel a little too much for some people, so we also offer telephone and email contact • Counselling – PEEPS is run by parents, and whilst we are always happy to lend an ear, we are not trained professionals. If someone affected by HIE feels that they would benefit from speaking to a trained counsellor then we direct people for that support • Funding – this to help with accommodation or travel costs if a child is in hospital. In addition, PEEPS can also provide funding for equipment such as the Firefly Go to seats for older children who may need a bit of extra support It’s been great to grow as a charity over the last 18 months, working along-side other organisations and attending events such as the Kidz to Adultz exhibitions. For more information contact PEEPS info@peeps-hie.org or phone 0800 9875422 Website www.peeps-hie.org
