HIE grade 1 newborn outcome

*update 8 years later* apologies for not updating sooner but my now 9year old who was the HIE grade 1 baby below is actually a genius. In her reception year she had an argument with her reception teacher about black being the absence of a colour! She is top of the class for almost everything, one of the first free readers in her year, is articulate, intelligent, sensitive, hilarious and mature. She is just brilliant and her birth has made not a jot of difference to her brain development. She can be a total perfectionist and highly strung/anxious which is probably linked to being first born and perhaps there maybe an element of not being held by her mama for the first 24 hours of her life and the traumatic start but could be any other number of factors so I try not to worry too much. All those early days worries are soothed. Hope all your grade 1 HIE babies turn out just as awesomely. So pleased this post is still a comfort for folk. Sorry for the long delays. I got locked out of the blog for a while! *update ends*

 

The title of this post is what someone typed into a search engine to find my blog.  I wanted to reach out to that person and reassure them.

This morning my 20month old daughter spelt out her own name. She has a short 4 letter name but she sounded out the letters and scribbled some shapes which are her version of her name. She also can recognise her own name when it is written down.

I’m no child development expert (despite doing rather a lot of study into it at university and in my work) but I reckon that that is pretty clever right? In fact sod it I am just going to come right out and say my kids a genius and put on a smug mummy face!

My munchkin is a very clever little girl.  She understands lots and is learning new words every day.  She can walk, run (and climb- eep!) and is such a lovely smiley social little thing. You would never ever ever know about her start in life.

When she was born I was googling frantically just like you.  I wanted to see the future and it wasn’t until she was 4months old and rolled over in advance of her peers that some of the worry subsided and I knew she was going to be okay, but the worry is still there and I know it is and I do try and stop it.  Munchkin was a tiny little bit late to walk or say first words – she is totally in the normal range for achieving these things but I worried it was because of her start, and I really need to stop thinking like that. She passed all her developmental checks and is meeting all her milestones- some in advance of peers and some a bit later than peers and ordinarily this wouldn’t cause me any concern. But because of her HIE Grade 1 diagnosis and her MRI result showing “evidence of hypoxic injury” I think I will always have a worry at the back of my mind (but then I must focus on the fact her consultant said it wasn’t brain damage it was neuro-cortical fuzziness and that the infant brain is so plastic that they were all very positive about her prognosis).

Her consultant did offer to repeat her MRI but at the time we had been through so much and she was doing so well we decided not to put her through that again, but then part of me wants to know that her brain has healed – that all is fine and that she is fine. But then what does a picture of a brain tell you about a person? Nothing. It doesn’t tell you she constantly demands “uggles” (cuddles) from her mum and dad, it doesn’t tell you that she loves to run away laughing from you when you try and get her socks on.  It doesn’t tell you she says “wuvee” (love you), and it doesn’t tell you what an awesome little smiley happy lovely girl she is.

I know I need to work harder on not worrying about her and knowing she is 100% normal and fine and all round ace but I know that I find that difficult especially as I still partly blame myself for her diagnosis (although I am working very hard on that and I am a lot better than I was).  I think her being okay makes me okay.   I also know how much worse it could have been had she been grade 2 or grade 3 then I don’t know how we both would be. And I count my blessings that Grade 1 is usually prognosis normal and she is!

Anyhow I hope your little one with Grade 1 HIE turns out as awesome as munchkin and I hope you are able to worry less about prognosis and outcomes but I also know how hard it is especially as so much of the information out there is for grade 2 and grade3-ers, which makes you feel relieved but guilty at the same time.  Anyhow if you ever come back to this blog and find this post – get in touch maybe I can reassure you further. Anyhow know that I can understand and empathise with what you are currently going through.  I wish I had been able to find another grade 1 HIE baby’s mummy when I was in the early days with munchkin so I want to do that for someone else.

Thinking of you.

xxx