Understanding HLHS

Once you have been given a diagnosis, there are two schools of thought. One is that ignorance is bliss and finding out too many details about your baby's condition can cause you to spiral, while the second is that knowledge is power and the more you know the better you will be equipped for most eventualities.

A has openly acknowledged that the world of congenital heart defects ("chds") in babies is one he has, to this point, been completely oblivious about. Having a baby is such a complex and delicate matter that there are a million things that have to occur in perfect sequence to have a healthy child. Yet thousands and thousands of perfectly healthy babies are born each day and most people can take for granted how complicated a baby's development really is.

I've known about CHDs through personal experience as one of my closest friends was born with a CHD and had her first open heart surgery when she was 5 months old. Yet I still wasn't aware of just how complex heart defects in newborns can be.

So for all our friends and families who have ever been curious about our baby's diagnosis or just want to know a little bit more, I thought this post could help outline what we are facing.

A walnut heart

The story begins in 2007 when we (A&S) first met and fell in love. A shotgun engagement a year later followed closely by the most epic big fat Indian wedding in 2009, we began our lives together in the beautiful North West of England.

Days turned to weeks, which turned to months and then years and before we knew it, we had marked the transition from carefree student life to adulthood with establishing new careers, purchasing our first home and cementing our relationship on a bedrock of the three things that all happy marriages must hold in some measure: patience, laughter and a shared sense of adventure. We traveled and studied, growing together with love.

Soon the biggest adventure of our lives to date beckoned and we decided, as many young couples do, to try to have a baby.