Once upon a time there lived a couple who
had a young child. This child was the
apple of their eye, clever and bright and they wished they could have another
so that the child could have a baby Brother or Sister. Imagine their joy when they found out that
their wish had come true.
The baby was born a healthy weight and
with no complications. The family were
so excited Mother and baby were soon allowed home.
It was not long after that that the
Mother became a little concerned. The
baby seemed happy enough, but did not want it’s milk as babies should. The Mother questioned this but was told it
was nothing to worry about. As time
went on the Mother’s concerns grew. The
baby was losing weight, it was still not taking much milk. There was something else too, something she
couldn’t really describe, the baby just did not seem right. It was not really engaging with people or
surroundings, yet the baby seemed content and even managed a smile now, but
that smile appeared mostly when she was looking at lights. Oh how that baby loved lights, infact that
seemed to be the only thing at times that triggered any response. Once again the Mother questioned this but
was told that the baby probably just had reflux which would explain the loss of
weight and feeding issues. They said
she was just being over anxious.
More weeks went by and the baby’s weight
had dropped off the scale. She was no
longer the plump little bundle she had been at birth but now looked frail and
skinny. The Mother noticed that her
precious baby was not doing the things that she should be doing, she was hardly
feeding, was losing weight and yet in a strange way still seemed content. Something was wrong. Very wrong.
At the hospital the Mother sat holding
her baby in her arms, waiting. She had
been waiting to see a consultant for a long time now but she did not care. She wanted tests done, she wanted
answers. Finally they saw her and again
they tried to fob her off, but this woman was made of strong stuff and she
stood her ground. She knew that she had
to be the voice for this child as no-one else seemed to be able to see her like
she could (she did not know it then but she would be shouting up for her child
for the rest of her life).
Tests were done, Downs Syndrome, Cystic
Fibrosis and many more. All came back
negative. The Mother wanted more, a
brain scan perhaps? The hospital said
she should stop worrying and go home.
A week later the baby had an MRI scan,
sorted out privately by the couple who by now had given up trying to convince
the hospital.
NOTHING, absolutely NOTHING could have
prepared them for the results that came back.
Their precious child had been born with an underdeveloped brain. The reasons for this were not known. The full extent of the damage would not
become clear until the child got older but there was a chance she would never
be able to sit up, walk or even talk.
That families world fell apart that day.
Once they had gotten over the awful news the
family set about trying to get the very best help and support for the child
they loved so very much. Surely now
they had the MRI results things would be easier? It was not always to be.
Without a recognised diagnosis (a label people could identify with) the
child once again became almost invisible.
Getting help often required filling in forms and the forms wanted a
diagnosis, an underdeveloped brain was a symptom not a cause. People would often ask what was wrong with
the child. The Mother would try and
explain saying no-one really knew but she could see them looking at her
disbelieving. How could anyone not have
a diagnosis in this day and age? Surely
the Mother should have the baby tested?
The Mother felt alone and afraid.
Good fortune was about to fall at last on
this special family. One day the Mother
came across a support group called SWAN UK (SWAN stood for Syndrome Without A
Name). She learnt that there were lots
of others out there who were born without an official diagnosis. She joined the group and at last she was no
longer alone. Her child was no longer
invisible to everyone, there were others who could see and understand.
THE END BEGINNING
This is not a fairy story it is based on real life
situations
It is estimated that 30-50%
of children with learning disabilities and 50% of children in contact with NHS
Regional Genetics Centres may never get a diagnosis to explain the cause of
their difficulties. Life for families of these children is extremely isolating
– they have no idea if their child will ever walk, talk, what their life
expectancy might be or if future children will be affected. Many of these
families feel they don’t ‘fit in’ with other parents of diagnosed disabled
children so don’t access wider support groups. SWAN UK is a project designed
specifically to meet the needs of these families. Building on the support
previously offered by the charity ‘Syndromes Without A Name’ (SWAN), the SWAN
UK community offers families the opportunity for mutual support and information
sharing.
On Friday 24th April it will be #UNDIAGNOSED
CHILDRENS DAY. There are many ways you
can support this day.
Organise or attend a fundraising event for #SWAN UK (SWAN FUNDRAISING PACK)
Raise awareness on Social media
Most of all remember that just because a child is #undiagnosed
they are NOT INVISIBLE
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