A sister came to take me down to see our daughter. My wife wasn’t really fit to go wandering so she stayed behind. As we walked to where our daughter was I was told there were problems. Soon after I met the term HIE. I was told there were three grades. I thought those affected were split into three roughly equal groups. I was told our child was grade 2, which seemed to be a ‘we don’t know how things will turn out’ 1 sounded mostly fine. 3 sounded mostly scary.
I was told there’s an experimental cooling technique being trialled at a local hospital, it’s like putting water on a burn, but it needs to be started as soon as we can so she needed medicating for transfer.
I asked if we could get my wife down before she got transferred. A nurse looked annoyed as it seemed to mean she’d have to draw up fresh meds, but they got her down and we were all transferred to hospital two.
Our daughter was the biggest kid in the incubator. Lots of computers, displays, numbers, alarms and wiggly lines on monitors. At one point a woman came into the ward with a trolly. ‘Books for mothers of premature babies’ I wasn’t a mother and our daughter wasn’t premature so she left.
At ten days old, it was MRI time, so off to hospital number 3. At the handover to the transit nurse my ears pricked up when stage 3 was mentioned. Apparently our daughter had changed grade.
Time has moved on, we found that if you said it in full, medics thought you had training. Looking back you desperately want to know what’s going to happen and you sort of think someone should be able to explain what it means but in my experience the definite confident answers you get are young medics trying to cover that they’re not sure.
Lots of unknowns and guesswork, but then if we hadn’t had problems we’d still not really know how our child would turn out. We’ve met some good medics on good days. And some bad ones on bad days.
Take notes. Ask questions, but know that the honest answer could be ‘we don’t know’. Try and get some sleep. Remember to eat. One of the great people we’ve met said the one thing we do know is that if you love your child as much as you can, you’ll get the best results. So that’s how we’re trying to go through life.
Sharing what is important to the parent/s, reducing the need to revisit trauma & opening up supportive conversations. Our info sheets have been designed by parents, with parents. You can download, edit online, or get in touch for copies. Alternative formats % languages available.…
We listened to parents and designed, with them, a sticker to go on maternity notes for those who have previously experienced an H.I.E. event. Please share and support - a small gesture that could really help. If you’d like stickers posting out just get in touch! #HeardOfHIE…