Tom's Journey

When our beautiful Tom was born in April, along with his twin Alex, we were overjoyed.  Although he had been diagnosed with a lung condition called a sequestration during pregnancy and we had been told that he may not survive to birth he was a healthy wee baby who would need surgery before 12 months to remove a little part of his lung but other than that perfect.

The poor wee soul developed an abdominal hernia at 9 weeks but this was repaired with surgery.  It was around this time that he started to have difficulty feeding.  For the next 8 weeks he was in real pain every time he tried to eat and was obviously hungry.  But when he was diagnosed with reflux and when prescribed omeprazole this problem disappeared and he became our happy wee boy again.  However, we were very aware as the two boys lay on the play mat together that Tom was not moving anywhere near as much as his brother and when Alex could hold his head up Tom still could not. 

Initially, at 7 months Tom was diagnosed with muscular myopathy.  We were told that our gorgeous wee boy would be unlikely ever to walk.  This was devastating news but we started to get our head around it and had a lovely Christmas with the family.  After another visit to the Neonatal clinic there were questions raised about whether the diagnosis was correct as he appeared to be deteriorating which we had noticed too. 

In January he was diagnosed with SMA type 1.  After this there was a rapid deterioration which involved nasogastric feeding and constant suctioning as he could no longer swallow.  In spite of this Tom was still a smiley happy boy.  Simple things gave him pleasure.  He loved interaction with members of the family, he would smile hugely when he saw his twin brother being bounced and he loved to see the reaction on other people’s faces when he made his helium balloon bob up and down.  He also used to like licking a spoonful of chocolate ice cream, enjoying the sensation and the taste.  

The boys’ birthday in April was a strange day, as we celebrated we knew this would probably be Tom’s only birthday.   After an incident in May when Tom was very difficult to wake he started to need oxygen a lot of the time and had to start pump feeding as he could not cope with any more than 20mls of feed an hour.  By the beginning of June he was on fairly constant oxygen and morphine. 

Tom died, on the 10th of June, very peacefully in his sleep after going to bed as normal and getting a story in his bed beside his brother.  We take comfort in the fact that our little boy who loved his routine and familiar surroundings slipped away with no discomfort in his sleep.   He was the most beautiful, happy, selfless, stoical child I have ever known and we will always miss him.

Tom	Alex and Tom

Little Snowdrop   (Author Unknown)

The world may never notice
If a snowdrop doesn’t bloom
Or even pause to wonder
If the petals fall too soon
But every life that ever forms
Or ever comes to be,
Touches the world in some small way
For all eternity
The little one we long for
Was swiftly here and gone
But the love that was then planted
Is a light that still shines on
And though our arms are empty
Our hearts know what to do
Every beating of our hearts
Says that we love you