Louis' success story
"Louis is our third child and was born an apparently healthy and happy baby. This was a
great relief as we had been told at a 37 week scan that he appeared to have extra
fluid on his brain so we were expecting him to have difficulties.
In the first few months we began to realise that he was not progressing in the
same way as his older siblings. During this time we had several scans and were told he had
suffered a stroke during the later stages in the womb.
"My memories of his first two years are of constant scans, physiotherapy,
speech therapy and portage. He had low tone and was fairly wobbly. He reached
all his milestones late and didn’t walk until he was over 2. We were told that
the stroke would effect his physical development but had no answers as to why or how much.
During this time Louis was a happy and confident little boy and loved by everyone who met
him. We had concerns over his communication and by about 18 months were concerned that
he was deaf. The portage worker and physiotherapist who saw him every week felt the same.
The audiologists fobbed us off with a simple test after test. He seemed to respond to
the sound of the spoon against the mug! Yes, hearing tests of 6 years ago! We were told
third children with developmental problems wouldn’t speak yet.
"We knew they were wrong but we desperately wanted them to be right. Louis would be
looking for me, crawling from one room to the next and never responded when I
called him. He seemed desperate to communicate and really alert to us but not
to the sounds around him.
"Louis initially wore hearing aids for almost 2 years. They gave him little benefit
and he only responded to very loud noises. Whilst we were being assessed for an
implant, we moved from London to Winchester for him to attend a special needs nursery.
Whilst this was fantastic for his physical problems, he found the noise very distracting
and did not make the progress we had hoped. When he was nearly 3 we received a letter
from his neurologist in London. This told us that his difficulties had been caused by
an infection during pregnancy called CMV. She had established this by sending his
newborn Guthrie test to an expert in the Netherlands. We now know that this could
have been confirmed by a simple blood test at birth as Louis had classic symptoms.
One of the common effects of CMV is progressive deafness. Louis had been let down by
the system twice. If they had tested him at birth they would have been looking
closely at his hearing. Most of the scans could have been avoided.
"It was at this time that a teacher at Louis’ nursery mentioned the Elizabeth
Foundation. It was 28 miles away but worth a look. When we arrived we felt as
if all the pressures and worry of the previous 2¾ years were being lifted
from our shoulders. We spent the morning sitting in a class of about 6 children
who all seemed to communicate in the same way as our son. The laughing, the
eye contact and the enthusiasm. The staff knew how to treat deaf children and
those children responded to it. Louis joined in immediately. The following week
he started one day a week . Louis had his implant and it was switched on when
he was 4. I drove down to Portsmouth 3 days a week for him to attend the
Foundation. They supported us as Louis was taught to respond to his name
and gradually learn to say a few words.He loved music and playing outside.
They helped him with his other needs, balance and motor control. When he
was diagnosed with epilepsy they allowed me time to talk and cry. They were
a support to the whole family. Louis’ brother and sister were always welcomed
and encouraged to join in. We attended parents’ evenings and his grandparents
attended a special information day. Deafness affects the whole family and
The Elizabeth Foundation understands this.
"Louis is now 8 and at a mainstream school with lots of help. The skills he
learnt at the Foundation have made him communicative, good at listening and
well behaved. His speech is coming very slowly and he is beginning to read.
He is confident and happy and loves football and Doctor Who and playing with
his doting older sister and brother.
"The Elizabeth Foundation is like a family and we are still part of it.We try to
attend their fundraising events. All of our extended family have become involved.
Louis’ daddy runs the 10K for them every year, his Grandad helped with some
charity wristbands, Granny and Grandpa held a fundraising dinner party and Uncle
David did the triathlon. I work as a volunteer whenever I can to help with
paperwork and fundraising. I see the happy faces and small babies with hearing
aids and I just remember what those early difficult years were like with little
professional support. My only regret is that no one said those three words to
me earlier…..”The Elizabeth Foundation”.