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). The hows and whys are a mystery and still under investigation.
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.
May attends Small Steps School for Parents. 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!
For further reading on my attitude towards our situation, please read my blog entry ‘Don’t insult the half-brained baby!‘
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.
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
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)
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
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.
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.
Happy Late Birthday Baby May ! We share a birthday
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
Our 4 month old daughter suffered brain damage from lack of oxygen at birth, how bad only time will tell. I will begin visiting this site on a regular basis, it is nice to be in “contact” with people going through this.