Thursday, 21 November 2013


We celebrated our 17th wedding anniversary recently (actually we forgot but that's another story!).  That same date was also the anniversary of something that has become equally if not more important to us.  It is the anniversary of the day we found out our first child had been born with a congenital heart defect.

Ds1 post surgery in November 2000
I had originally written a post about this day and finding out about our son's condition but when I read it back I felt that it was too emotional.  I wanted to write about the excellent doctors and other staff we encountered 13 years ago while at Alder Hey and how they saved ds1's life that day. My post didn't convey this at all and this made me feel like a fraud.  It made me feel this way because while we had some very stressful times when ds1 was ill, we did all come through it.  The memories are still very raw for me as a parent but ds1 is, as far as anyone else is concerned, a very normal 13 year old boy.  We are so lucky because he survived.  There are plenty of parents who do not get the same happy ending however, and I'm very conscious of this.

When we had our second child we were immediately offered a pulse oximetry test for her.  Dh took her to the special care baby unit while I was recovering and they were gone for only 15 minutes or so.  It was such a simple test to do and quickly put our minds at rest as to the health of our newborn daughter. Our hospital had the equipment and so no extra cost was incurred.  Had ds1 had the same test at birth it would potentially have picked up his condition, Transposition of the Great Arteries, straight away and he would have had surgery sooner, which would have been better for him and for the surgeons too.  

A few months back I was surprised when a friend posted a link to a petition on Facebook campaigning for pulse oximetry screening in newborns.  More than 10 years has passed since dd1 had her test and still this hasn't been rolled out so that every newborn in every hospital in Britain can have the same.  About a third of all congenital heart disease in newborns is detected before birth via the 20 week anomaly scan, pulse oximetry screening could raise this figure to three quarters if it were available to all.  That's a lot of children that could be helped sooner and a lot of parents prevented from going through what we had to.  It would even save lives.

I would urge anyone reading this to sign the petition.  My original draft of this post talked about how all the healthcare professionals that saw ds1 after his birth had missed his condition, I was very angry about this, but now I'm not.  The reason I'm not is that it really wasn't their fault.  In order for any healthcare professional to help us they have to be given tools to enable them.  There is an argument that adding an additional test to newborn screening would use up valuable NHS resources, but having the test in place would have meant in ds1's case that there would have been no extra visits from my health visitor in the early days, no doctors appointments, no ambulance called, no late night transfer to Alder Hey, and that's a lot of resource that could have been saved.  A link to the petition can be found here along with more information on pulse oximetry screening.

Our wedding anniversary this year was a celebration of 17 years of marriage, it was also a celebration that 13 years ago we were very lucky.  I hope that one day other new parents will no longer need to be as lucky as we were because their babies are able to have this test.

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