Peeps HIE - October's Cause of the Month


Posted on October 1st, 2019 by Nina Chinsky

We found ourselves in the world of HIE when our daughter was born in March 2015 – she stopped breathing shortly after birth and, without any warning, our NICU journey began. Neither me nor Steve had heard of HIE before, none of our friends or family had, and let’s 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, the advice and information offered by other mums and dads, I think we 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.

Peeps HIE

Each HIE journey can be so different, and the outcomes vary greatly, but we felt it was important to offer support to all families who may have been affected by it. Our starting point was providing parent packs to Neonatal Units – they have info in them, as well as a few comfort items and a “Little Warrior” baby grow. We’ve also been invited to attend Study Days to talk to health care professionals, and collaborate with other charities…joining forces is great!

We also want to raise awareness. HIE affects around 4 in every 1000 births, so it’s not uncommon, but it’s not really something people have heard about. The 4th April is now HIE awareness day, and our first event last year was a huge success – #HeardofHIE even trended on Twitter!

So as we’re growing we now have plans to reach more families, supporting children who are growing older (the world of additional needs can be an expensive one!) and also ensuring that people have the emotional support as well.

We can only carry on what we’re doing with the fantastic support from fundraisers and volunteers. The Giving Machine is a great way to be involved, and we’re thrilled to be on board!



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