It was at the end of June this year that Sammy and I had
to take a trip to London, this was quite a daunting prospect as we live a
quiet, semi-rural sort of life near the sea these days and its many years now
since we've been to central London. I used to drive to and from Euston
Station regularly when Sammy was in her late teens to early twenties to enable
her to travel (in a supported group) to and from college in North Wales but
driving wasn’t going to be an option this time.
So the train and London black cabs it had to be to get us to our
destination. I really wasn’t feeling
adventurous enough to go on the underground especially as Sammy doesn’t cope
very well with down escalators she tends to finds them a bit disorientating (must
admit that I’m not too fond of them either) and she doesn’t like to feel too crowded. Also because of the reason we were going it
was important for Sammy to be as calm and relaxed as possible after all she was
the one going to be doing all the work. Even
though we would be staying in a hotel overnight and we enjoyed a nice meal of
pizza and prosecco we were not on a leisure trip, Sammy was going to be taking
part in a research study. This was not
the first one she had taken part in so she had an idea of what to expect but it
was the first one in London as all the others have been in Cambridge. This particular study was an eye study
looking at the action of dead cells at the back of the eyes and was just one
study in part of a large research programme being carried out by the University
of Cambridge into Defeating Dementia in Down’s syndrome. I’m not going to try and explain about the
research as there is a video where Professor Tony Holland does that far better
than I would be ever be able to, hopefully this link will take you there https://youtu.be/pB7iqWUXQIM if
not the video can be found on the research page of my blog.
I’m so proud of Sammy for taking part in this research as
having drops in your eyes, needles in your arm, following dots in scanner
machines and hanging around in a hospital for six hours is not great fun at the
best of times and to be doing it when it is of no personal benefit is a really good
thing to be doing. She did it because
the results of this research are likely to have a huge impact for the better on
the lives of people both with and without Down’s syndrome in years to come. Beating dementia has got to be a good thing as
it is something that damages and steals people’s lives. Down’s syndrome on the other hand is not a
debilitating life threatening disease that causes people to suffer. It is a genetic condition that people are
born with resulting from the presence of an extra chromosome 21, yes people
with the condition do have some degree of learning disability and there are
health issues that may be more prevalent, although not inevitable, but these
things do not stop people with Down’s syndrome from leading full, active and
fulfilling lives.
Sadly though the thought of having a child with Down’s
syndrome still seems to be considered by societies in general as something to
be feared and avoided as myths and misunderstanding about the condition still
abound. It is very easy to fear what you
don’t understand or can’t visualise especially if fears are put into your head
by others. I became fearful when expecting
my third child, how many of these fears originated from inside me and how many
from external sources I can’t say. I do
suspect though that they started when the doctor began to talk about the
possible risk of my having another child with Down’s syndrome. What would having another child with
additional needs do to the dynamics of our family? Would we be able to cope if we had two
children with additional needs? Would I
be able to give all my children enough love and care? Was it fair to bring
another child into the world that may not have a very long life span?
.......... Also I was made to feel that it would be very irresponsible of me to
bring another child into the world that had Down’s syndrome. Sammy
was only four years old at this time, beautiful, healthy, much loved and
developing well, even if she was reaching her milestones a bit later than her
brother did she was meeting them, but all the information about how her future
would look or how long it might be was still so bleak. The general conclusion seemed to be that I
should have an amniocentesis, this is a form of testing that involves a sample
of cells being taken from the amniotic fluid that surrounds the foetus in the
womb and would detect whether or not my baby would have Down’s syndrome. It also involved a trip to London a very
large needle and a very anxious wait. That
trip was surrounded with even more concerns and anxieties than the recent one
with Sammy due to the risk of miscarriage and the uncertainty of everything. I did feel at the time though that it was
the right thing to do, all I can say now is that after nearly forty three years
of living with and loving Sammy I am so glad I didn’t have to make a decision
about termination as I might well have made one that I would have lived to
regret.
When Sammy was small understanding of Down’s syndrome was
very much based on research that had been carried out with people living in
institutions with little being known about how people would thrive living with
their families, being brought up within the community, having an entitlement to
education and receiving good medical care.
With so much more now being known about the condition and the potential
that people with it have to learn, to work, to live independently and to make
choices about their lives it’s hurtful to know that it’s still thought of as
such a severe disability that termination on the grounds of identification of
Down’s syndrome is still permissible up to forty weeks gestation. It also grieves me that with the latest test
NIPT (non-invasive pre-natal testing), which is considered to be 99% accurate
at detecting if there is a chance of a baby being born with Down’s syndrome,
there is likely to be to an even higher termination rate. In the UK this already
stands at 90% with it seeming to be expected that women will want to terminate
if Down’s syndrome is identified. I wouldn’t want to deny anybody the right to
choose whether or not to have a termination, whatever my personal feelings are,
but the pressure that there seems to be towards termination needs to stop. It’s vital that balanced unbiased information
is provided as standard to enable expectant parents to make a fully informed
decision and that the termination deadline is lowered to the same as for ending
other pregnancies. Then perhaps people
with Down’s syndrome won’t be made to feel that their lives are worth less than
other peoples. I would find it quite
easy to go on for ages on this topic, but I won’t, what I will do is finish
with a quote that I saw somewhere the other day. It’s from Disney’s Pocahontas a film that was
a firm favourite of Sammy’s for a while.
“You think that
the only people, who are people, are people who look and think like you. But if you walk the footsteps of a stranger
you’ll learn things you never knew you knew.
