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:
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| 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.
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.
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.
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| 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.
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.
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.
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:
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
Life In Holland 