May's History

Why I bottle-fed my daughter and don’t regret it

Posted on Jan 28, 2015 | 1 comment

Why I bottle-fed my daughter and don’t regret it

My breastfeeding battle lasted five weeks. “Battle” is the delicate way to describe it. The first five weeks of my daughter’s life, all spent in the neonatal intensive care unit at our local hospital. It was hard. I can’t deny that. And it was all because of breastfeeding. May was born brain-damged and even that she could suck was a victory. The breastfeeding team in the hospital were very supportive. They visited me every day, anytime I needed them. My daughter seemed to be making progress, but she was still dependent on tube...

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800 seizures a day: our epilepsy story

Posted on Nov 14, 2014 | 3 comments

800 seizures a day: our epilepsy story

This week on the Firefly Garden, bloggers from around the world are sharing stories about their children and epilepsy. I suppose our story makes for pretty grim reading. But years later, with May’s seizures down to 1 to 2 a day and causing her very little distress, we feel it is a triumph. Here is the post and make sure to click on the links at the bottom to read other parents’ stories: My daughter, May, was born with a severe brain injury. She had seizures every day, from birth. She has taken, at various points, anti-seizure medications including Phenobarbital, vitamin B6 (Pyridoxine), Pyridoxial Phosphate, Topiramate, Sodium Valporate, Lamotrigine and Clobzam. The last four she is still on every day, twice a day. Even with those drugs, May still has seizures at least once or twice a day. But, when she was a baby, they were as frequent as three times every five minutes. That is 864 every day. Did I just write that? May had over 800 seizures a day? While you mull over those numbers, consider this: those were only the ones we saw. Some seizures don’t manifest themselves physically. It is a horrible thing to say, but May’s seizures were so frequent when she was a baby and toddler I’d discuss them as casually as the weather. People would stop to ask if she was shaking from cold or fear, and I’d respond, “Oh, no need to worry, it’s only a seizure.” They looked at me like I was insane. Most asked if they should call for medical assistance. “No, it’s fine,” I’d say. It’s a wonder no one called Social Services on us. 864 seizures a day. And yet, we never experienced any of the torment other children and their parents do: unconsciousness, urgent administering of emergency medicine, ambulances and hospital stays. At first they manifested themselves in a twitching of her arms and facial muscles – usually she’d continue on as if they’d never happened. If she was laughing when she started, she giggled through it. The doctors didn’t think the seizures would damage her brain any further. But, the seizures did interrupt activity and so we were told they could hurt her long-term development. So, how did we get from 864 seizures a day to 1 or 2? In short: medication. The long story: Read more at the Firefly Garden… And for more stories about epilepsy at the Firefly Garden click below: Sebastian’s journey with epilepsy Epilepsy: The Forest...

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Happy Birthday May! You are 5!

Posted on Apr 23, 2014 | 9 comments

Happy Birthday May! You are 5!

Sorry? May is what??? ((Gasp. Choke. Cough.)) Five? Yes, it’s happened. And this year my birthday cupcake making ended in disaster. Who knew Thomas the Tank Engine cupcakes (my choice clearly) have both cupcake mix AND frosting mix in the box. And, that they can’t be interchanged. NOTE TO SELF: Don’t open a bakery. As with previous birthday posts, let the celebrations begin! May, when you were born, here is what the doctors definitely knew you would be able to do: – pee – breathe Now at FIVE years old you can: – Bash your monkey toy and play independently with it, setting off buttons etc. for 20 minutes at a time. – Listen intently and be delighted by bedtime stories. It’s not just music you can remember but lines from books too! – Chew food like smoked salmon and scrambled egg (she is starting to chomp down now rather than just suck). – Eat a lot more and a lot faster. – Mainly cry because you are bored, which is a major improvement from the alternative and shows you want stimulation – Dance to your favorite song. (You will never guess what it is! Check out the video to hear for yourself.) – Hold your head in midline comfortably, dropping it with far less frequency. (Again, see the video!) And now, for that famous video. This is pure delight for us. After all, when peeing and breathing are all you are meant to accomplish, dancing is pretty extraordinary. And here May is dancing today on her fifth birthday: The song in the background is “You’re a big girl now” by Bob Dylan. In the video, May is using the Kidwalk walker by Leckey. It’s the same equipment that allowed her to take her first steps. Want to see how May has progressed? Read her previous birthday posts: Happy Birthday May! You are THREE! Happy Birthday May! You are two! May you are 1.5 years old! Happy Birthday May! You are...

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By popular request: May’s first steps!

Posted on Feb 28, 2013 | 11 comments

By popular request: May’s first steps!

Today, I received an emailed bulletin from BabyCenter. Subject: Is your baby walking? It landed in my inbox because my baby, Ieuan, turned one only two weeks ago. He is like any one-year old, more of a toddler now than a baby. Crawling everywhere. Standing on shaky legs, with a big grin on his face and one small step away from delicious trouble. And, that’s wonderful. That’s exactly how it is supposed to be. But, I have another child. My daughter, May, who is also a “toddler” though she has never toddled. She is three. May is severely brain-damaged. After she was born, the only things the doctors could be sure that she would ever be able to do was pee and breathe. Pee and breathe. How did I deal with that information? I didn’t really. On so many levels, I didn’t. I love her dearly, but I’m not one of those mothers who has a disabled child and would never change a thing about her. I would. In an instant, in a heartbeat. My heart. I’d give up my heart. For one single, wobbly step. I’d give up my heart for her to be able to feel the world move beneath her feet. For her to control her life that little bit. For her to propel herself. Independently. One step. I would give her my heart. The BabyCenter email I received said, “Your baby’s first steps– this is huge. It’s exciting to watch your new walker’s bowlegged locomotion, but it’s equally fun to see the look on your baby’s face: part surprise, part joy, part holy-moly-I-can’t-believe-I’m-really-doing-this.” The video below was taken yesterday. It shows May about 45 seconds after being strapped into a walker for the very first time. Walking is not a miracle for May. It is three years of work, devotion, heartbreak and fury (and fun too, let’s not forget the best part) – all that went into every step. That is no miracle. Holy-moly-I-can’t-believe-this-is-happening. May, I give you my heart. SIDE NOTE: This post is here at the request of the medical community – I love that, it makes me sound so important. By request, I mean the tiniest bit of encouragement from the doctors I gave a speech to tonight to the Barts and London/ Queen Mary Neurological Society. It doesn’t take much to convince this mama to share a post and video of May! You can also see an additional BONUS footage here on my post Walking and giggling: That’s how we do it! I hope you enjoyed it. And, a huge thank you to Anna Nagy who invited me along to speak and all the doctors. Your perspectives are so...

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This might make you angry. If you’re a midwife.

Posted on Nov 27, 2012 | 14 comments

This might make you angry. If you’re a midwife.

300 doctors in a room = polite applause (and a few shouts of “Bravo! Bravo!” Okay, I made that last bit up.) 1 post where I question why anyone would choose a home birth over a hospital = reader RAGE Admittedly, I don’t get it. It seems far too risky to me, during a very risky event: birth. If your toddler stopped breathing, where would you choose to be located: in your living room or in a hospital? Every single parent, in the entire world, would choose the hospital. I can’t imagine putting myself or my baby at risk, even if it was only a 15 minute ambulance journey to the hospital from my home. 15 minutes is a long time when your baby has stopped breathing, or you won’t stop bleeding. Having said that, I’m still reading the research to discover if my opinions have any basis in fact. And – let me tell you – it is hard to find research that is conclusive or unbiased about this issue. Of course, because of what happened to May, midwife-led births make me nervous. Not the midwives themselves, but the fact that there is no team to consult, no life-saving equipment, no hospital and all the resources there. I continue to believe that in a hospital, my infection would have been treated sooner. That, in and of itself, may have saved May. If you want to throw tomatoes at me about it, here’s what I said: Clearly, not all midwives are bad; all doctors aren’t necessarily good. But medical science has come a long way, and the drive away from doctors and the safety mechanisms of a hospital, by many soon-to-be-parents, is one I find completely baffling. I agree with Carol Sarler, writing in The Daily Mail this week, that doctor-led births are not promoted and the reasons why are pretty shocking. As she says, “for the NHS, it’s cheaper, on its current costings: a home birth averages £1,066, a  midwife-led unit birth £1,450 and a hospital birth £1,631. So, seemingly for the sake of a measly few hundred quid, misinformation is routinely delivered and anti-obstetric philosophy deliberately spread.” The phrase birth choice is batted around, with many mothers feeling their choice is stigmatised or refused. For me, there didn’t seem to be a birth choice. I arrived at my local GP’s surgery, pregnant, and they referred me on to their attached midwife clinic. I was a nervous first time mother, but the midwife leading their birthing classes shrugged off my worries as silly. She was as stereotypical as you can get: a hippy who spoke lowly of pain relief and, while she kept insisting that we could have the birth we wanted, promoted heavily their home birth service, calling contractions a “bit of discomfort”. “You may feel like you are about to die,” she once said, “but pain never killed anyone.” Maybe not, but birth can. Romantising it, or glamoursing it, or even shrugging it off as a natural process can not escape the fact that until very recently, birth killed. It still is the biggest killer of teenage girls worldwide. Why isn’t it in the UK? Hospitals.  There’s more. You can read the full article on the BabyCentre...

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