HIE grade 1 newborn outcome

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

About LadyCurd

Likes ladybirds & lemon curd. On reflection combining the two names was a mistake.
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18 Responses to HIE grade 1 newborn outcome

  1. Hannah says:

    I’m not the person that this was directed to but I found your link in Netmums when I was googling HIE grade 1. It made me cry, which is pretty incredible because I had conpletely shut down all emotions. My baby is 8 months and also grade 1 HIE. I feel so many of the same emotions as you. I would do anything to know what the future has in store for us. I want to be prepared but I know that’s impossible. I’m filled to popping with anger towards the doctors who are responsible for this, worry for my girl and how her life will be and sadness that it happened to her. All of this is crushing me and yet at the same time I don’t feel I have the right to these feelings because she might be alright.

    Thank you for posting this blog. I hope, more than anything else, that I will be able to write something similar in a year’s time.

    Best of luck to you all xx

    • Oh sweetheart I am so so glad you found my blog. How is your little one? Have you had any counselling?
      We have to remember vast vast majority of grade 1′s are totally fine- and munchkin maybe mental and drive me mad but that’s nothing to do with her oxygen starvation that’s just who she is! Sounds awful but I always feel slightly better comparing munchkin’s development to other babies/toddlers- as if she is ahead/on par with them (which most of time she is) when they don’t have HIE then I know there is nothing to worry about. Do shout if I can help at all- even just to rant. Hope your LO is okay.

  2. mok says:

    My wife gave birth to baby girl a week ago. Like your baby she was HIE grade 1. I dont know what future lies for her and i can’t get those worries out of my mind. I can only pray to God to help her and my family.. Thank you for your post.
    I’m from Malaysia.

    • Oh I could cry reading that. :( I know it is so so so hard but I swear my little one is now nearly 2 and you would never ever know about her start in life- she is bright as a button is talking all the time and is constantly dashing about. I hope it will be that same for your little one.
      Thinking of you.

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  5. Kirsty says:

    Hiya ur little on sounds like mine lol! I often find myself looking back through his discharge notes abs thinking my god, my first baby was in NICU. Everything was surreal and can’t remember everything that really happened ( what there was telling me! ) I do have a question thou, what exactly is HIE? I’m confused! I remember bits been told to me! But what is it in lay mans term? Tried googling but it’s more medical terms! Thanks in advance xx

    • LadyCurd says:

      Hypoxic Ischemic Encephalopathy or Oxygen Starvation basically. How is you baby now? Mine is a mentalist and totally fine at 2.5years old. x

      • Kirsty says:

        Hiya
        Mine is so clever and makes me proud everyday! He makes every body laugh and his speech is superb!! I couldn’t praise him enough he’s energetic and crazy ! And he is just 2 yrs 1 month! Everyone at nursery is shocked how he knows animals and knows what noise they make every colour! And he’s just learning shapes!! Amazing he is! How’s your little one doing, it still scares me the thought of it :/ xx

  6. Katie Avery says:

    Hi reading your post was lovely! My little boy was born with hie grade 1 and has developed so well it’s unreal! Our paediatric doctor suggested placing him in nursery when he was 6 months old for one day a week and it was just what he needed to keep his development on par. If you were to see him in the street or in the class room you would think that there was nothing wrong! But living with them not being able to control emotion and being up and down is hard but rewarding when they learn to control it! Leon’s speech sometimes goes funny but still really understandable and the teachers at school don’t really notice it :-)! The only think I will say that you may notice is how unsteady and slurred speech they get when spinning round or going on tea cup ride, it’s like putting an adult drunk on a play ground round about and can affect for a few hours after xxxx

  7. Charlie says:

    Hi – we are from London but in the US at the moment, in the process of adopting a baby boy. We were at the birth 10 days ago which ended up being very traumatic. Long story short….Carter was deprived of oxygen due to the cord being wrapped around his neck, but we think was more susceptible to this due to the calcified and thin cord, so probably had less oxygen during the pregnancy (but we’re just assuming). He was straight into the NICU and had high acidosis and difficulty breathing on his own for a while. He actually turned it round fantastically well but following an MRI, showed an HIE. He’s now with us as we process the legals to adopt him and is sleeping well, feeding great, moving fully and is alert. Everything expected from a normal baby. We have though been in incredible turmoil, day to day, wondering whether we should take on the potential of what could be a very difficult future for him and us. It has been diagnosed as a mild HIE, so we pray for all to be well. How is your little girl now?

    • LadyCurd says:

      Hello, I’m so sorry for the late response. Only just saw this. My little girl is now better than fine advanced of many of her peers in fact especially verbally and fine motor skills. We have absolutely no worries about her at all anymore.
      Good luck. How is the little one?

  8. Fredrik says:

    Hi, I’m from Sweden and got a daughter three weeks ago. Everything worked out fine just until she was supposed to take her first breath and start screaming, which didn’t happen. It came out of no were as all the diagnostics had looked just fine until then. From there it was chaos and they had to give her CPR and we ended up in NICU. The following days, as different test results started to come in, they disconnected cables and machines one by one before they diagnosed her with HIE class 1 in the end. The doctors reassured us our daughter was to be ok and we were sent home after a total of “only” 4 days at the hospital. This is my first, and with this experience in mind, probably only child. She is really cute, are breast feeding well and is everything you could expect from a baby. But I am still very much on my guard and are reading to much on the internet for my own good. I mean look at me, a have read all the swedish info and discussion boards and now turn to the US sites, I hadn’t found anything like your blog post before and wanted to thank you, it’s spot on!. There is not much discussions on HIE class 1 outcome online and it’s really comforting to hear that another with the same diagnosis have had such good outcome as the doctors predicted.
    Regards
    \Fredrik

  9. amani mohamed says:

    hello, thank you for this information my little girl was dignose wtih stage 1 HIE in 9-14-2012. she is
    4 month now, and I serching for information about her condition and I just found your blog I hope
    she turn fine like yours , she is developing very well but I still scare of the future, last week they told
    me they is low signal in some part of the brain when she had eeg ,now I’m waitng for her doctor
    appoinment to see what is all that mean I’m so worried I hope every thing well go well.

  10. Hi my son was dignoised with hie grade one but i still dont know all the facts we have seen his consultant onze and he was plsed with his progress and dint want to put him through an mri he is now 8 and a half months and he is such a happy lil soildger he is crawiling rollin and babbles and says a few words mum dad nanny grandad yes and no and has 2 teeth evrything seems fine but i worry that something is wrong. I got sverve pre clyamsier and had to have him at 36 weeks and he was resuated they took him stright to nnu were he was put into a sleep and put on. Ventlaters and all sorts of tubes they done a brain scan and he had a shadow on his brian they told me alsorts but did not explaine to the fullest and with being so poorly myself my head was all over the place we finaly got to take him home to have to bé rushed back in as he had developed meingitus and he had to stay in for a further 14 days i tryed to ask more questions but noone wanted to tell me anything so i dont no wat to look for if anything goes wrong i just feel in the dark about his condition as he doin so well but we been told all this stuff and the discharge notes make no sense

  11. Rachael says:

    My youngest son was diagnosed with grade 1 HIE after I suffered a complete placental abruption. We went through the same concerns in the early days (especially as his big brother had global developmental delay and autism) but he is now a boisterous, bossy and extremely bright 6 year old who is very happy and doing very well at school.

  12. Vicki says:

    Hi I’m in Australia. My son is 4 months old amd this post is exactly what I needed to hear right now. Thank you so much for taking the time to write it. I was induced early with my son due to complications and his start to life was terrifying to say the least. My son still has some delays but we hope that they will resolve with a bit more time. We will also be seeing a pediatric opthamologist this week as he has a squint (possibly not a good sign) but he is feeding and growing so well – 95th percentile (possibly a good sign!) It’s so hard not to stress about the future and I really hope he has as good an outcome as your little munchkin.

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