He was the most
amazing little boy I have ever met. His extraordinary big blue eyes were
captivating and I was so proud of the life I had helped to create. Harry had
a huge amount of drugs to take everyday to try and manage his condition, but
taking them never fazed him. He would be examined by doctors on a weekly
basis - bloods taken, his body scanned - but he remained brave throughout
each appointment. He was our little soldier. When he began to smile his face
just melted our hearts. We also found out that Harry was profoundly deaf,
but this was a minor problem compared to his heart condition.
At this point
we hadn’t told many people of Harry’s poor prognosis and I was desperately
trying to find some miracle stories on the internet, but to no avail. The
few stories I did find were sad ones - babies taken at six hours, four days,
three months – none of these babies were surviving. Still, we lived in hope
that Harry would be the exception, after all he had come this far.
We shared the
most amazing family Christmas and New Year with him, filled with love – he
truly made our lives complete. On Bank Holiday Monday, just after New Year's
Day, we decided to take Harry in to the hospital where he had been treated.
He wasn’t feeding well, was sweating and becoming increasingly fractious. He
was having episodes where he would struggle for breath and turn purple with
his eyes just staring at you, longing to take the pain away.
As a mother I
instinctively knew that he didn’t have long, so we arranged a blessing with
close family members. The nursing staff at the hospital made him comfortable
and we spent as much time as we could holding him, stroking his hands and
cheeks preparing to say goodbye.
Harry passed
away five days later, peacefully in his daddy’s arms. He had mustered up all
his energy to open his right eye to look at us and I smiled at him and told
him not to be scared and that we loved him.
Harry was the
most precious gift we have ever been given and I don’t regret a moment of
the heartache we have suffered. You see, at my twelve week scan we were told
that there was something wrong with Harry as the nuchal fold measurement was
6mm which could indicate a chromosome abnormality. The doctor who saw us
said that Harry would not survive outside of the womb. But we took the risk,
didn’t have an amnio but did have lots of scans which didn’t show anything.
Would we have
done anything differently? No is the answer - Harry was meant to be here, he
was meant to make a massive impact on our lives. Of course, myself and my
husband now have to undergo genetic testing to see if Harry’s condition was
inherited from one of us, and if it was an isolated heart condition, or part
of a bigger chromosome abnormality such as Noonan’s Syndrome. We would never
have knowingly given Harry anything, but to prevent any future children
suffering it is vital to know if we carry the HCM gene.
I know that we
will never get over losing Harry, he will be forever in our hearts and I do
believe time truly does heal. I only have to look at my husband and I see
Harry. We are not bitter about Harry being taken from us either – we are
thankful for the time we did have with him and the time we had with him to
say goodbye – something many people do not have the chance to do.
The following
phrase sums up Harry’s short time with us.
‘Even the smallest of feet can leave the biggest impression.’
Lisa Redfearn
