Saturday, 25 March 2017

Dear Beautiful Boy... (Age 6)

Today you turned Big Boy Six and what a special birthday it was - and how very different from all of the other birthdays that have gone before!

Of course you got up at 5:05am, as I should have expected, you were excited to start your day.  Perhaps Mummy and Daddy weren't *quite* so keen to get up at that time of day on a Saturday, but ever your devoted servants and all that...  But we kept you upstairs until we were all ready, Mummy had been well supplied with coffee and we'd even been able to poke some life into your teenage brother (sorry George, I know 7am on a weekend hurts!)  

But finally, I drew you over to me, did my best to make eye contact (always a difficult thing for you but that's ok) and I started to sing and sign, "Happy Birthday to you, happy birthday to you..."  You cocked your head a few times, trying to listen and work out the unfamiliar words and then a light dawned in your eyes as you said excitedly, "Presents?  Adam, presents?"  Nice to know you've got your priorities right, just as any birthday boy would!

Well, after that, there was no holding you back as you played your "searching" game with Daddy and combed the house for presents.  Finally, Daddy let you open the lounge door to find at least thirty balloons (Daddy and I were a bit light-headed after blowing all those up last night!) and precisely Six Presents - just the way you like it.

It was such a joy to watch you fall on those presents and rip them open with squeals of excitement.  I couldn't help thinking of just how far we've come from the days when presents were scary and something to be avoided.  Once you'd had a play with your new Thomas the Tank Engine set, composed a symphony on your keyboard and firmly discarded the clothes and books (boring), it was time to get into the car.

As always, we left at just the right time to fit with your Saturday morning routine, but this time your weekly trip to Little Rascals Soft Play included a party with four other children - nearly half of your class from school managed to come.  At first, you were very worried and uncertain to see your classmates out of context so you did what all birthday boys should and ignored them for a while...but then J arrived.  Oh how you love J!  He's your very best friend in all the world and your face just *lit up* when he arrived.  From that point onwards, you two were the central sun around which all of the other children orbited as you flew down the slides, played football (in your own unique way) and clambered across anyone else who got in your way.  It was the first time ever that your Daddy and I could just sit and watch you play, completely surplus to requirement and delighted to be so.

Eventually, remembering that it was your birthday, you and J helped yourselves to the presents from the other little girls' birthday party and couldn't *quite* understand why they weren't your presents but we wrestled them out of your clutching fists and returned them, slightly red-faced to the shocked parents in the other party who hadn't been *quite* prepared for two six-year-old autistic boys to crash their party...and steal their presents. Ah well, welcome to our world!

But finally, having run yourselves absolutely ragged - and with the tomato red face to prove it, both of you were tired out so came the challenge of separating you from your gang at which point the respective meltdowns began.  Thankfully though, all sets of parents are well versed in the a) Negotiate and Cajole b) Try Again c) Finally, Scoop the screeching, thrashing small person up into parental arms and run....  

Finally wrestling you into your carseat and offering all the usual rewards to help you calm down, we were off home for a long, long afternoon nap to rest and recover.  Maybe tomorrow we might give you time to listen to all of your special messages on the answering machine - one of your very favourite things - "You have six new messages.  Message one...."  It always brings a smile to your face whether it's the first or 41st time you've pressed the button.

Beautiful Boy, I hope you enjoyed your sixth birthday, I know I did - and that is definitely an achievement.  Thankfully, despite all of the challenges that still face us, those days in intensive care finally seem a long way behind us and so our experience of your birthday just doesn't take us to the same place it used to.  Now, we can just celebrate the unique and beautiful gift that is you.  I love you baby boy, you might be a very big, strong six year old...but you'll always be my baby.  Happy birthday sweetheart...  

Sunday, 5 March 2017

5 Live Investigates

Today has been a fabulous day of awareness raising on the increasing number of Group B Strep infections in the UK and the devastation these can cause.  A number of parents, including me, have shared our stories with BBC Radio 5 Live today.

To set the scene, in January I joined Fiona and Scott Paddon, the charity Group B Strep Support and a large group of supporters and MP's in delivering a petition to the Department for Health asking for GBS screening to be introduced to standard NHS prenatal care.  Fiona Paddon, as the instigator of the petition, movingly shared her story of the death of her son, Edward, at just nine days old - as a result of a preventable GBS infection.  At that point, the petition contained 256,000 signatures (and is now almost 300,000).  That bears saying again:  Over a quarter of a million people in the UK want GBS testing on the NHS.  

I, along with the charity were therefore incredibly disappointed to receive a largely standard response from Phillip Dunne MP, Minister for Health which repeated many previously used phrases and included:  "I note the petition about GBS and fully appreciate the concerns raised by signatories." He then continues, "We have a national ambition to halve the rate of stillbirths, neonatal deaths, brain injuries that occur during or soon after birth and maternal deaths by 2030.  This includes harm and death caused by GBS."  

So far, so good - right?  Not quite.  The Minister continues to say:

"The 2012 recommendation not to screen women at 35-37 weeks of pregnancy for GBS was due to insufficient evidence to demonstrate that the benefits of screening would outweigh the harms."  

"You may be aware that Public Health England (PHE) advised and published a position paper which sets out that within current accepted clinical guidelines, there are no indications for testing women using ECM methods."

"Thank you again for taking the time to write to us about this important issue and I hope the current activity in this area demonstrates that the Government is doing all it can to prevent stillbirths and devastating neonatal infections such as GBS."

(You can find the entire letter on the GBSS website here:  http://gbss.org.uk/wp-content/uploads/2017/03/2017_02_24-Philip-Dunne-to-Jane-Plumb-re-GBS-Petition.pdf)

The charity responded by saying, "We are so disappointed by this letter - it may be that the minister does 'fully appreciate the concerns raised by the signatories' but, if that is so, he has failed to show it in his letter."

You can also find the charity's complete response to the letter here:  http://gbss.org.uk/latest-news/minister-health-responds-256k-signature-gbs-petition/

But of course, despite our anger and disappointment, we are not going to walk quietly away from this fight and all supporters of GBS are encouraged to write to their MP's expressing their concerns about the current position.

We were therefore very pleased when "BBC 5 Live Investigates" decided to devote a majority of their program today to the issue of Group B Strep.  They interviewed Charlotte Heath, whose daughter Aimee is five years old and has been left with Quadraplegic Spastic Cerebral Palsy and Pseudobulbar Palsy which means that she cannot sit up unaided, she cannot stand, she cannot walk, she cannot talk.  Aimee is still tube-fed and only just learning to feed herself; she will need a lifetime of care.  5Live also interviewed me on the Breakfast Program as I shared Adam's story with them and, as you will know, Adam is hearing impaired, visually impaired, asthmatic, autistic and globally developmentally delayed.  

Both of these infections, and their resulting lifelong disabilities for our children could have been prevented with prenatal GBS testing, using the ECM Gold Standard test and simple antibiotics for both Charlotte and I during labour.  This is the same test that the Minister for Health says, "there are no indications for testing women using ECM methods."  

Well Minister, that just isn't good enough.  Group B Strep is the single largest cause of serious illness in newborn babies in the UK and two babies a month, every month, contract the infection.  Some will survive without complication, but many will die and many more will be left with serious disabilities.  It is time, and past time, to join the dozens of other countries around the world who DO test for GBS because then and only then will I believe that, "the government is doing all it can to prevent stillbirths and devastating neonatal infections such as GBS."

You can hear my interview with Sunday Breakfast on BBC Radio 5 Live here at 2hrs 40mins: http://www.bbc.co.uk/programmes/b08gwcmr



You can also hear the entire "5 Live Investigates" Program with Charlotte Heath, Jane Plumb and other parents contributions here:  http://www.bbc.co.uk/programmes/b08gwcnf

You can also see articles on the BBC News website here:  http://www.bbc.co.uk/news/health-39158603

And also on the BT News website here:  http://home.bt.com/news/uk-news/one-baby-dies-every-two-weeks-because-of-a-preventable-infection-probe-finds-11364161622029

One baby dies every two weeks in the UK of GBS infection and this can be prevented.  When will the Government wake up and act to stop this devastation?