About May

September 18, 2009 at 08:53

Mama Lewis

12

May was born on April 23rd, 2009. She suffered poor feeding, shallow breathing and major seizures in the first 12 hours of her life. She stayed in the Special Care Baby Unit for almost six weeks.

(You can read more about this in the post ‘The Story of May’s Birth‘)

May has severe brain damage caused by oxygen deprivation. The medical term is hypoxic-ischemic encephalopathy (HIE; for more definitions of medical jargon and silly acronyms see my GLOSSARY.) The hows and whys are a mystery and we will probably never know the reasons.

There are also on-going investigations into May’s seizures which, initially, we thought disappeared, but never had. She has taken, at various points, anti-seizure medications including Phenobarbital, vitamin B6 (Pyridoxine), Pyridoxial Phosphate, Topiramate, Sodium Valporate and Lamotrigine. The last three she is still on.

Aside from all this, she is a constant source of amazement and delight to her parents. We were told she might never eat or hold her head up, let alone enjoy a vigorous bounce. She continues to defy all these original predictions.

How she has achieved so much with such little brain power perplexes and amazes us all. She is definitely in-charge.

For further reading on my attitude towards our situation, please read my blog entry ‘Don’t insult the half-brained baby!

Want to help children like May?

May attended Small Steps School for Parents until 2011. Small Steps teaches parents like me how to help their child gain independence. They are a very small, charitable organization that does not charge parents any fees. Please send them a donation!

12 Comments

  1. Caroline November 15, 2009 Reply

    My ten year old daughter had HIE grade 3 at birth, after 20 mins of no heartbeat prior to birth. She also was very groggy the first few weeks of life and spent 5 weeks in SCBU (she was 6 weeks premature). She has done so much better than I ever imagined. She has mild cerebral palsy and dyspraxia, she attends mainstream school can walk and talk. Everyday things can be much more difficult and take her longer than others. She has also been late to hit milestones but gets there in the end.

  2. yasmin November 16, 2009 Reply

    Just read your article in the Guardian. I found your honesty and love of May so moving and I wish you all happiness. She is a really beautiful little girl and she is lucky to have such fabulous parents. I'll keep reading the blog to see how she does. xx

  3. Sam Jenkins November 21, 2009 Reply

    Hi Stacie,
    I'm filled with wonder and admiration. Baby May is so lucky to have you to fight for her.
    Keep drinking the tea!

    Sam (Katie's dad)

  4. Monica November 23, 2009 Reply

    Hi Stacie
    I've been reading your blog ever since the article was published in the Guardian.
    I really admire your attitude and think May sounds gorgeous.
    Good luck with everything!
    Monica

  5. Sandrine February 3, 2010 Reply

    Hi Mrs,

    I dnt knw if u remember me but u taught me English at Dormers Wells. Im really sorry to hear that about you're baby but am happy to hear that you are coping so well. You look like a great Mum. Hope you all the best in the future.

    • Stacie Lewis February 3, 2010 Reply

      Thanks Sandrine!

      It is so great hearing from an ex-student - and you are really sweet to write in to say such lovely things. I hope you are doing well too! Feel free to email me and fill me in with what's going on with you if you get the chance.

  6. aerial pameticky May 11, 2011 Reply

    Happy Late Birthday Baby May ! We share a birthday :)

  7. Sheba September 26, 2011 Reply

    My ten year old daughter had HIE grade 3 at birth, after 20 mins of no heartbeat prior to birth. She also was very groggy the first few weeks of life and spent 5 weeks in SCBU (she was 6 weeks premature). She has done so much better than I ever imagined. She has mild cerebral palsy and dyspraxia, she attends mainstream school can walk and talk. Everyday things can be much more difficult and take her longer than others. She has also been late to hit milestones but gets there in the end.
    +1

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  9. ceri-ann March 14, 2014 Reply

    Hi there. Thank you for sharing yours and your daughter's story.
    It has brought me tears, but also some comfort.

    3 weeks ago I gave birth.. I had (like you) a healthy, low risk, great pregnancy. I was in labour and rushed for an emergency c-section as my daughter's heartbeat had slowed down.

    My daughter had been dead for 8 minutes but brought back to life. As a result she has suffered brain damage - she cannot suck, swallow or cry.

    We will never know how severe her problems are until she reaches each milestone. Like you, it looks like we will have a constant team of specialists overlooking her development. I like that we are being supported but it hurts so much - why us? Why her? I don't know if she will ever speak, walk, talk etc. It's heartbreaking. Especially when everything had gone so well.

    I am yet to find someone else who has gone through this I can properly speak with about this. She is still in hospital and we don't know when she can come home. Our world is in pieces. I am so so happy she is alive, and now breathing for herself.

    You are both (well, your whole family) an inspiration. She is a beautiful girl and has come so far. I wish you all the best and hope that my little Amy-Rose has a bright future ahead too. I feel so lost and confused. xxx

    • Mama Lewis March 14, 2014 Reply

      Ceri-Ann - I am so sorry to hear this. Congratulations on keeping it together and staying so strong for your little girl. (I love the name Amy-Rose by the way. Rose was on our baby name list.) Will you please email me and I can write you back personally? My address is contact.stacie@gmail.com.

      • ceri-ann March 15, 2014 Reply

        Hey there,

        Thank you very much for responding!

        I have just sent you an email now :) xxx

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