Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
HIE Awareness Day 2023
Okay, admittedly I am a few days late in writing this one as HIE awareness day was indeed April 4th. It seems quite apt given that my daughter Amy-Rose, born with HIE was also late. By at least 4 weeks. So there we go. This time of year seems rife with relevant awareness days for us - we've had epilepsy, cerebral palsy and now HIE! Truly a time to be aware.
I find that most people don’t know what HIE is. In spite of it not being relatively common (approx 2 or 3 babies in every 1000 live births, and less commonly later in life for some), people often look aghast if I mention “HIE”. It stands for hypoxic ischemic encephalopathy. In short it means lack of blood oxygen and restricting of blood flow affecting the brain.
There are a variety of reasons HIE can happen, be it placental abruption, meconium aspiration, cord entanglement, and many more. Amy was full term, and I had a very unproblematic, even at times, pleasant pregnancy.
I certainly did not foresee any of what unfolded in February 2014.
Amy is now 9. It’s amazing how your language in relation to HIE evolves and changes over that time. When Amy was first born I recall frantically seeking answers. I was comparing every other “grade 3” baby to Amy and trying to work out how her outcome would be. I remember reading over and over again about Apgar scores (conditions recorded about a babies’ health immediately after birth).
I remember when Amy was two months old. I was sitting on her bedroom floor in the middle of the night with her in my arms. I was trying to bolus feed her milk through her NG tube and was really struggling. The milk kept going down then quickly overflowing over the syringe because her reflux was so bad. When the feed was done, I kept her on my shoulder feeling her start to settle. As she settled I reached out for the bag of leaflets I had received from the hospital. Almost all of them were about prem babies. Amy was not prem. In fact Amy looked quite the giant in NICU next to the other tiny babies.
I stumbled across one leaflet about HIE.
The leaflet depicted children running through the woods looking happy. The information within it was very limited and didn’t offer any real comfort or insight. I started to sob uncontrollably. What had happened to her? How will she be? Will she run through the woods?
Fast forward 9 years and thanks to an amazing charity called PEEPs HIE and increased awareness via social media, far fewer parents are being left in the dark on those NICU wards wondering what on earth HIE is.
Truth is, you often only know what HIE is because it has affected a loved one in your close circle.
These days I don’t find myself saying HIE ever really. Once Amy received her cerebral palsy diagnosis this tends to be the main umbrella term for the conditions she has now, and even then, Amy is Amy. No medical labels needed.
I no longer think about outcomes.
Or running through the forest. I know that now Amy is non mobile, non verbal, tube fed, has epilepsy, has respiratory challenges. I wonder if I knew back then how things would be now, what I would think? I think I would have been truly overwhelmed - I can’t keep someone alive with that amount of medical need!? But we can, and we do. It’s amazing what everyone can overcome. We, and our children are so resilient.
We were very lucky that when Amy was born she met the criteria for cooling therapy. This is where the baby is kept in a hypothermic state (33 degrees) to prevent further injury to the brain. This technology hasn’t been around for long and I am so thankful that Amy was born when she was! Honestly, I don’t think she would have been here had it not been for the incredible medical technology and workers we have today.
I no longer spend the day seeking out alternative therapies, or wishing I did more of XYZ
I have had enough harsh life lessons now to learn that sometimes, doing your best and just getting through the day is more than enough. Be patient, be loving, be kind, have a wobble, be grateful, do what you can. But don’t agonize over the future, no matter how unclear it may be. I strongly wish I had tried to enjoy those early days more. Her cute little size, the baby phase. I spent so many nights obsessively researching feeding issues and so much. It needed doing, but I also think I put myself through a lot of undue torture in desperation for things to be easier for us all.
On HIE awareness day I like to think of those who are at the very start of their journey. I send them so many well wishes and so much love and hope. I don’t think Phil or I have ever been so scared as we were back then. It’s an unimaginably painful time for everyone involved. I hate that HIE still happens. I think it will always happen, unfortunately. Hopefully over time treatments such as stem cell therapy will be better understood and implemented to ensure the best possible outcomes for these children.
I also think about the parents like us - in and out of hospital constantly.
Though we do face many daily challenges, I think our life is a happy one. Sure, there are things I would change. I would like Amy to be more comfortable, to need less medication and intervention. I would like her to be a little less angry and bossy! But in terms of acceptance, the “wait and see” seems to be over, and now it’s about “adapt and enjoy”. I send my love out to all of those HIE parents in hospital, wondering if it will ever get easier, or more fair? We send love to our fellow HIE best friend Jaxon who has been very poorly now in PICU for way too long now.
I think also about those who have experienced loss through HIE. It’s a sobering and devastating truth that not all of these children will live a long life. It’s obviously something I try not to think about. We came very close to losing Amy in December 2022, and every chest infection, every seizure you’re hoping with all your might that she overcomes this and continues to live. I never forget any of the children we met through HIE. Though they may no longer be alive, their memory is always very much alive to all of us and we send all of our hopes and best wishes to the families they have left behind. There are very little words of encouragement other than to be there and keep the memory and names alive of these amazing little fighters.
