This is our story of ups and downs, of ventriculomegaly and hypotonia. I hope it might give some parents a bit of insight into our lives and what a joy our perfect little boy is.

”Aerodynamically, the bumble bee shouldn’t be able to fly,

but the bumble bee doesn’t know it so it goes on flying anyway.” 

We all have a story, I suppose I shall start with ours! I am a mother of three boys and a wife of one wonderful husband. We began our unexpected and unplanned journey of parenthood with out first wonderful son who was a joy as a baby, he slept through the night at 6 weeks and we thought this parenting thing is easy!! So we were blessed with our second son two years later. He didn’t sleep for the first two years of his life and to say that he is a spirited little boy is an understatement!! So we decided… no more children!!

In 2013 we were very surprised to find out we were expecting our third bundle of joy! I was so huge at 12 weeks I was convinced I was having twins so we had our first scan and just one big baby! The pregnancy was going well and we were excited to go for our 20 week scan. At this scan we heard the words that every parent dreads – there’s something wrong. To be honest it was one of the scariest moments in our lives, our little babies ventricle was measuring larger than it should be. What did this mean ?? We heard words like ventriculomegaly, hydrocephalus –  I had no idea what these meant – the sonographer urged me not to google it but obviously I did. Google filled my head with images of babies with giants head, hydrocephalus and every parents scariest dreams.

Around Christmas time we got another scan and it confirmed the enlarged ventricle, so we were sent for an MRI and an amniocentesis. All these came back fine but the ventricle was still enlarged and growing, nobody could tell us what this would mean for our baby. We tried to focus on the positives but with endless scans and doctors appointments it was really hard.

The day came for me to be induced, and our little baby did not want to come out… after a very long 15 hours our little boy arrived at 23:55 – not breathing. It was the longest 8 minutes of our lives. Sirens went off doctors ran in, and still there was no crying. The faintest little murmer’s started to come from this little bundle of joy, but there were still concerns. He had such low muscle tone, he wasn’t feeding and obviously his enlarged ventricle still hung over us.

After three days we were discharged with this lovely passive little boy who loved cuddles and kisses, but what were we to expect for his future?

This is Matthews story…

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