Monday, 31 March 2014

Tesco Mum of the Year Awards

Last night, Channel Five broadcast a 'highlights' version of the Tesco Mum of the Year Awards.  Jane Plumb, founder and chair of the charity, Group B Strep Support was honoured with the 'Campaigning Mum of the Year' award.  

Nominated by her son, Ollie, Jane was recognised for her immense efforts fighting for greater awareness of the devastation caused by Group B Strep following the death of her son, Theo, at just seventeen hours old.  Since Theo's death in 1996, Jane has become an immense advocate for greater awareness of the condition and continues to campaign for the ECM Gold Standard Test to be made available to all pregnant women on the NHS.

Tragically NICE still do not support the introduction of this test, despite worldwide medical evidence demonstrating it's effectiveness and the massive reductions of Group B Strep Infections in countries where the test has been introduced.  At this point, the GBS infection rate in the UK is rising year on year.

As Adam was infected by Group B Strep, which triggered Meningitis at his birth, Jane asked me to share Adam's story with Channel Five as part of the video broadcast during the awards ceremony at the Savoy Hotel and subsequently aired on Channel Five on Mothering Sunday (and it will be re-aired this Wednesday evening).  The version that aired yesterday was a 'highlights' version of the ceremony which was initially over two hours long and so my participation in this video is very brief.  

However, for those who missed the broadcast and wish to see it, you can find the 'catch-up' version at the Channel Five On Demand website by following this link.  Jane's award is presented at 19:10 of the video.

In due course, Group B Strep Support will make the entire video available on their website at which point I will share the complete version.

In the meantime, I would like to offer my heartfelt congratulations to Jane and to the charity for this award.  Being the humble woman she is, I know Jane will instantly confirm that the support of her entire team has made this possible and that is of course true; I also know that without Jane's determination and sheer stubbornness, GBSS would not be where it is today.  I am more grateful than I can possible say that she was able to channel her grief for Theo into founding this amazing charity.  We have received so much support during our own trauma of enduring Group B Strep and without Jane and the team, it would have been so much harder.

It was therefore my honour to participate in this video, even if it did mean laying aside my pride and crying on national television!  I truly hope this promotes greater awareness of the devastation of Group B Strep and the fact that it CAN be stopped.

If you are pregnant, or know anyone who is pregnant, please contact Group B Strep Support to learn how you can easily and affordably buy a private test to learn whether or not you are a GBS carrier.

Tuesday, 25 March 2014

Dear Beautiful Boy.. (Age 3)

Today, you turn three. Well, technically not until 10:00 tonight, but I won't hold you to that. This morning I woke up with you snuggled into my arm as you had decided by 1am that your cot was definitely not the place to be. As your Dad snuck out of bed, you instantly reacted by playing starfish as you sleepily claimed all of his sleeping space. The look on your face said, "Finally! At last, I've got some space! You guys just take up so much ROOM in MY bed!" I grinned and watched you squirm around. When you finally opened your eyes, you looked at me and then crawled back into my arms for a three second cuddle before squirming away again. Long cuddles have never been your preference, too much sensory overload for you I think, but the thought was there.

Softly I said, "Good morning Big Boy Three..." You smiled at me for a moment and we lay there looking at each other before you slid off the bed and went to find something more interesting to do. I watched your little blonde head looking this way and that as you stood on the landing, "Hmm....flush the toilet or play with toys in my bedroom? Toilet or toys? Toilet or toys? Decisions, decisions..." Finally, you trotted back into my room, crawled up on the bed and decided to sleep on the decision for a minute or two.

Baby, I hope you don't mind that we haven't given you your presents yet today, I know you don't like to be rushed when it comes to uncertain things like presents so we thought we'd treat Saturday as your birthday just so you can do things in your own time.  Maybe we can even blow up some balloons for you to play with then.  At least two of your nurseries are now well stocked with party biscuits so you'll be the star of the show in both today.  I hope you don't get too overwhelmed  if they make a fuss of you.  Particularly as you don't understand what a birthday is or why it should interfere with your routine.  I know these things are often difficult for you.

As I drove away from your first nursery, leaving you munching your toast with the other children, that old fist squeezed my heart as I remembered once again, as I probably always will, that this day marks the point when we first met you...and also the time when we nearly lost you. Suddenly, I was there in NICU all over again, hearing the beeping of the SATS monitors, seeing you lying so still and so yellow in that tiny incubator. Watching the doctors and nurses doing everything they could to save your life, while also somehow finding the time to take care of us.

I couldn't help it, the tears started to come.  I swiped them away telling myself not to be silly, today should be a day of celebration.  It should be a day of remembering that you are still here, not looking backwards to a time when you nearly weren't.  But as your Dad later said to me, 'Yes, it is three years on...but it's only three years on."  I think he's got it in a nutshell, three years is either the longest time in the world or the shortest, depending on which direction you're looking.

Today, I look in both directions.  I look at your adorable smiling face, thinking about how cute you looked in your fleecy onesie pj's, with your hair sticking straight up and busily sucking Dumbles as you snuggle into me...and I fall in love with you all over again.  Then I can't help but remember your tiny, bloated, yellow body lying so still and covered with tubes, wires and a life support machine breathing for you and I grieve all over again.  For what happened...for what didn't need to happen...for what I will keep on fighting to do my best to make sure doesn't happen to other families like ours.

It helps that I know we're not alone.  I was talking to Jane just yesterday who, last week, marked the birthday and anniversary of her son who would have been eighteen.  She said then that it gets easier, but there are still times when she is right back there too.  Remembering...grieving...reflecting on how far they've come.

I can't help thinking that this isn't the most cheerful birthday letter baby boy, I hope if you ever read it in the future, that you don't think I hate your birthday because I don't.  Every year we celebrate having you with us is another year in which we remember that you won your fight.  It's also another year when we remember the amazing doctors and nurses who saved your life...Sarah...Gina...Steve...Lynn...Dr Tyler...Dr Deshpande...and so many others who took care of you, took care of us, and helped us bring you home.  I can never say thank you to them enough.  Without their care, you wouldn't be here, but because of them, you are.

Thank you for fighting my beautiful boy.  Thank you for never giving up.  Thank you for being here to celebrate being a beautiful, gorgeous, snuggly Big Boy Three.  Life may be complicated and the journey may have had many twists and turns in it, but you're here and that's all that matters.

I love you my darling, always and forever.

Mummy xoxo