Blog post – Heidi, Mama to 22 month old warrior, Edward

Blog post – Heidi, Mama to 22 month old warrior, Edward

“H.I.E., where do I start? H.I.E. is complex, H.I.E is different for everyone I meet. It took me one whole year to talk about HIE out loud. I had googled it in those early days in NICU, you know those days when you should be resting with your baby, not going down this deep, dark rabbit hole! I had to stop searching. I knew what I needed to know about Edward’s brain injury, I did not want to know anymore than I needed to at that point.

Edward was discharged from hospital at the age of five weeks, on the 28th October 2021.

For those who are affected by H.I.E., hospital visits, admissions and appointments don’t stop at neonatal care. During November 2021 I was back and forth to hospital wondering whether Edward was having seizures to be told by paediatricians, he’s still so young it’s hard to know for certain. Edward was diagnosed with Epilepsy the following January, at the age of four months old and at the age of seven months Infantile Spasms made an unwelcome appearance. They were incredibly hard to witness although incredibly harder for Edward and his developing brain.

Prior to reaching out to Sarah at PEEPS I was lonely, not because I didn’t have family and friends around, but because I was a new Mum, a medical Mum to my precious son who sustained a brain injury at birth and no one else could fully understand that. I didn’t expect them to. I also did not know anyone else whose baby had a H.I.E. event at birth. Sarah helped me navigate my way by giving me relevant information about what support was out there and what PEEPS can do for families. Bit by bit I was opening up to others and connecting with other families affected by H.I.E.

I won’t look back now, got to keep moving forward…or as Dory from Finding Nemo says “just keep swimming, just keep swimming!” I am grateful that I have good connections with other Mums who just get it, I think it’s important on this rollercoaster journey.

Although Edward has been seizure free since May 2022, seizures are very much on my mind everyday. The hypervigilance doesn’t leave you. I don’t think it ever can. Am I a stronger human being as a result of being a Mother to a disabled child? No, I am not! Do I have a deepened dark sense of humour as a result of the trauma? YES I do!

If you have made it to the end, thank you for reading. Reflecting whilst typing this blog has  surprisingly helped me, I should do it more often.”

~ Heidi