Friday, 29 June 2012

A Day at the House of Commons

Well yesterday was a long, tiring and very emotional day but equally very good day.  It felt immensely overwhelming to walk into the Houses of Parliament, not as a tourist, but to speak at a reception.  Just as I suspected, I broke down and cried while telling Adam's story but it clearly touched others in the room as many cried along with me.  

For the first time, I met other families who have also been affected by GBS and while my heart went out to each of them, it was lovely to realize that we really aren't alone and to have others who have been through the hell that we have.  It also reminded me just how incredibly fortunate we are to have Adam here with us and alive because a number of the parents told me that their children had died as a result of the infection.  

So, for those who wish to see it, below is the text of the story I shared with the Peers, M.P.'s and GBS families, and the images I used as a PowerPoint are interspersed:

8 Months Pregnant

In 2010, my husband and I were delighted that I was pregnant with my first child.  Based on regular appointments with midwives and consultants, I was confident that if there was anything wrong with me, or my son, this would be detected.  My pregnancy was entirely normal.

On Thursday 24th March at 12 noon, my waters broke but labour did not begin.  During the next 29 hours, I was checked by midwives three times and it was confirmed that everything was fine.  I had been warned that infection may become a risk if labour did not start naturally, so was booked for an induction just in case.  The nature of this infection risk was not explained so I wasn’t particularly concerned.  When my contractions finally began on Friday evening, I was relieved, despite being understandably nervous.  By 10:30pm that night, my son, Adam Edward Cheshire was born.  The midwives and doctors took excellent care of us and it seemed that Chris and I were simply the proud parents of a beautiful baby boy.  
The morning after birth, 15hrs old

The following morning my husband left hospital to get some much needed rest, leaving a recovering wife and a healthy baby.  But then Adam began to cry and he wouldn’t stop.  He didn’t want to eat or sleep and being cuddled didn’t help.  First the midwives checked Adam and then, becoming concerned, they called the Nurse Practitioner who also checked him twice.  Finally, I was told Adam needed to be taken away for some tests.  I had no idea where he was being taken. During this time, a rare complication of childbirth developed, leaving me partially paralyzed and in agonizing pain.  I rang my husband in tears telling him Adam had been taken away and I could not move.  My husband would later describe this as the beginning of the darkest days of our lives.

Over the next few hours, we learned that Adam had been taken to Neo Natal Intensive Care where his entire body began to shut down.  He was suffering constant seizures, had stopped breathing, his entire body was swelling up and he was bright yellow with jaundice.  The first time my husband saw him, he had an oxygen bubble over his face; he was blue and his entire body was convulsing.  Doctors put him onto a ventilator, a brain monitor and anti-seizure medication; he was catheterized and put onto a cocktail of antibiotics.  This resulted in a medically induced coma so his vital signs were being monitored through an array of wires.  Adam was being fed on an intravenous drip of hydrating solution because he could not cope with milk.  We had no idea whether our precious newborn baby son would live or die.  

By Sunday the doctors said they suspected Adam had contracted Group B Strep Meningitis – an infection that meant nothing to me.  By Monday, a lumbar puncture confirmed the diagnosis.  Words cannot express how I felt when I learned that he had contracted this infection from me. 

By Sunday night, Chris managed to get me into a wheelchair because I was determined to see my son.  The last time I had seen him, he looked like an ordinary baby.  This is the sight that met me that night:    

We were only allowed to take one photo, with no flash because of the seizures, and we thought it was the last we would ever have.   I was not allowed to touch my baby because he was simply too fragile. 

We wanted the truth.  So at our request, the doctors explained that Adam’s life was very much in danger but even if he lived, he could be facing an array of disabilities that ranged from brain damage, to cerebral palsy, epilepsy, blindness, deafness, paralysis – the list went on.  It got to the point that we were so numb, we could barely even cry. 

Thankfully, my son is a fighter.  Thousands of people around the world were praying for him.  The dedication of the doctors and nurses saved his life.  We took this photo the first time he opened his eyes.  

Finally, on the 18th April 2011, after spending his first 23 days of life in Intensive Care, Adam was allowed to come home.

Adam is now fifteen months old and absolutely beautiful.  However, he has been left with Congenital  Nystagmus, meaning his eyes wobble continuously from side to side.  He peers out of his right eye in an effort to focus.  No one yet knows how this will affect his vision in years to come.  Adam has also been diagnosed with Auditory  Dyssynchrony, a rare form of severe hearing impairment which means that one part of his cochlea works but the other does not, so it is possible he may be able to detect sound, but not to understand it.  Imagine listening to a staticky radio station all day – you can hear noise but it is meaningless.  He is constantly ill with one infection or another and doctors are beginning to suggest he may have reduced immunity and possible lung problems.  We have been warned that other disabilities or health problems may appear over time.

Adam remains under the care of five separate Consultants at four hospitals.  A Teacher for the Deaf from the local Sensory Inclusion Service visits the house regularly.  His Health Visitor will continue to visit until he is five and, based on his constant infections, he has regular GP’s appointments and is often on prescription medication.  We receive Disability Living Allowance for Adam at the middle rate and I receive Carer’s Allowance on his behalf. 

The support we receive by a team of professionals is beyond price to us and we are so grateful these services are available.  But this support comes at an ever-increasing cost to the NHS and the government.  The emotional and psychological costs to our family have been immense and we live with the scars. 

In my opinion, the “Risk Based Approach” to handling GBS amounts to playing Russian Roulette with the lives of babies and my son nearly paid the ultimate price.  Even though my precious boy is alive, at just a year old, his life is marked by disability.

The ultimate irony is that I am Canadian but as the child of British parents, I have dual nationality.  In Canada, GBS testing is a routine part of pre-natal care.  How would our lives have been different if my husband and I had chosen to settle there?  My son may have been protected from GBS and may not be disabled today. 

GBS testing is simple, safe and affordable.  It saves lives.  It saves money.  Please introduce GBS testing for the NHS.  Don’t allow more families to go through the trauma that we have.

There is also a video of the day which will be available on the new GBSS channel on YouTube soon.  Once it's ready, I'll add it here.  UPDATE:  The video is now available at:  GBSS Videos from House of Commons  Adam's story has also been featured in the new report released by GBSS and if you want to see that, you can find it on the GBSS website here:  New Report Launched at the House of Commons  (Follow the link saying to download the report as a PDF file)

The Royal College of Midwives website also picked up the story yesterday and you can see that here:  New Report Calls for Routine GBS Testing

Thursday, 21 June 2012

An Ambulance Down In The Valley

Around nine years ago or so, I first heard this poem from my chiropractor as he explained his reasons for believing preventative healthcare is far more important than treating symptoms of illness.  I'd forgotten about the poem for years but a couple of days ago, it suddenly popped into my head again and I realized it relates perfectly why I believe GBS testing is not only essential but just plain logical.  Have a read and see what you think:

‘Twas a dangerous cliff, as they freely confessed,
Though to walk near its crest was so pleasant:
But over its terrible edge there had slipped
A duke and many a peasant;
So the people said something would have to be done.
But their projects did not at all tally:
Some said, "Put a fence around the edge of the cliff"
Some, "An ambulance down in the valley."

But the cry for the ambulance carried the day.
For it spread to the neighboring city:
A fence may be useful or not, it is true,
But each heart became brimful of pity
For those who had slipped o’er that dangerous cliff,
And the dwellers in highway and alley
Gave pounds or gave pence, not to put up a fence,
But an ambulance down in the valley.

"For the cliff is alright if your careful," they said,
"and if folks even slip or are dropping,
it isn't the slipping that hurts them so much
as the shock down below-when they're stopping,"

So day after day when these mishaps occurred,
Quick forth would the rescuers sally
To pick up the victims who fell off the cliff,
With their ambulance down in the valley.

Then an old man remarked, "it's a marvel to me
that people give far more attention
to repairing results than to stopping the cause,
when they'd much better aim at prevention.
Let us stop at its source all this mischief, cried he.
"Come neighbors and friends, let us rally :
If the cliff we will fence, we might almost dispense
with the ambulance down in the valley."

"Oh, he's a fanatic." the others rejoined:
"dispense with the ambulance - Never!
He'd dispense with all charities, too, if he could:
no, no! We'll support them forever.
Aren't we picking up folks just as fast as they fall?
And shall this man dictate to us? Shall he?
Why would people of sense stop to put up a fence?
While their ambulance works in the valley?"

But a sensible few who are practical too,
Will not bear with such nonsense much longer
They believe that prevention is better than cure
And their party will soon be the stronger
Encourage them, then with your purse, voice and pen
And (while other philanthropists dally)
They will scorn all pretense, and put up a stout fence
On the cliff that hangs over the valley.

The Best Loved Poems of the American People
Compiled by Hazel Felleman

Written by Joseph Malines
Published by Doubleday, 1936

At the moment, unlike many other countries in the world, the NHS have refused to "put a fence around the edge of the cliff" by introducing routine, prenatal GBS testing.  Because so many more women carry the GBS bacteria than babies will be infected by it, they believe there is no need for a fence at the top of the cliff.  Instead, they operate "an ambulance down in the valley" and "just as fast as they fall" they pick up the babies who become infected by GBS by taking them to Neonatal Intensive Care, treating them with vast amounts of antibiotics and other emergency medications and then continue to support the children who survive with ongoing disability support.  This was our experience with Adam and once he got sick, that "ambulance down in the valley" picked him up and treated him.  They saved his life and so I am incredibly grateful that emergency care was available.

But why let them get sick in the first place?  Why not "build a fence at the top of the cliff"?  "For the cliff is alright if your careful," they said..."  Not many babies will get GBS infections.  We don't need to worry about prevention.  So long as we treat them once they're sick, that's all that matters...isn't it?  But "building a fence" is less expensive than maintaining "the ambulance down in the valley", it's more effective, it's more humane.  There are medical statistics that show unequivocally that it has worked in other countries - It's simply logical.

As I'm preparing to visit the House of Commons next week to share Adam's story with MP's, I truly believe "a fence at the top of the cliff" in the form of routine, prenatal GBS testing makes so much more sense than relying solely on "the ambulance down in the valley".  I hope and pray this logic makes sense to the MP's as well.

Saturday, 16 June 2012

Shropshire Star

While at college on Tuesday, I was surprised by a phone call from a reporter at the Shropshire Star  saying they read the blog and so had seen that I will be speaking at the House of Commons in a couple of weeks time.  I'm delighted to say they have published a lovely article about it in tonight's paper, here's a copy of the story:  (Thank you Steve)

Tuesday, 5 June 2012

Who knew where this journey would take me...

If you'd told me a year ago that I would be invited to speak at the House of Commons, I don't think I would have believed you - but a few months ago, I had a phone call asking me to do just that.  

As most of you know, because of what we have been through (and continue to go through) with Adam, I am a passionate supporter of Group B Strep Support or GBSS, the amazing charity run by Jane Plumb, who campaigns for the introduction of routine GBS testing for pregnant women and for better education and awareness of the infection.  Jane founded the charity back in 1996 after one of her children died as a result of a GBS infection and has recently been given an MBE by the Queen in recognition of her continuing work on behalf of babies and their families.

At the moment, the policy on GBS testing is being reconsidered and as a result of the report due out this month, Jane is organizing a lunchtime reception, hosted by Alison Seabeck M.P. at the House of Commons on 28th June.  In addition to the medical information given by Prof Philip Steer on GBS, Jane wanted a parent with direct experience of a GBS infection to share their experiences.  So, she has asked me to share Adam's story in an effort to put a human face on this devastating condition.

Although I've known about this for a couple of months, I couldn't say much about it until the event was organized and public but I've now been given permission to share.  To say that I'm amazed, honoured and more than a bit intimidated to be speaking in such a location would be a bit of an understatement!  So at the moment, around essays, I'm trying write my speech in a way that shares Adam's story briefly but captures the essence of what the lack of GBS testing has cost Adam and our family.  The only problem is that at the moment, every time I read aloud what I've written, I start crying!  Hopefully lots of practice and editing will help that.

I'd be grateful for your thoughts and prayers both as I write the speech and also on the 28th itself when I'm reasonably confident that I'll be a bundle of nerves!  

(Thank you for the honour Jane - I hope what I ultimately share will help the cause and protect babies in the future. :-)