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

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