CHD Awareness week 7 - 14 February
Imagine the scene, after years of trying, (with some heartbeaks inbetween) along comes the long awaited Little Leon after a reasonably uneventful pregnancy, Arriving on the 7th December. to all intents and purposes Mother and baby are doing "well".
So we spend the day telling friends, family and in all honesty, anyone who would listen about the new arrival and thinking how lucky we were. So Helen & Leon Stay in hospital overnight and I go home to get my "last" night of sleep before we bring him home the next day.
Or at least that was the plan...........
The next day it all goes pear shaped. Leon has a lousy night and wouldn't feed, the Breast Feeding stasi had pretty much blamed Helen and said there was no problem she just had to try harder! (But that's a whole other story!!!) Luckily for us a rather observant Paediatrician had picked up that something "wasn't quite right" and wanted to check out a few things, so they would just take him to SCBU and do a few checks. Whilst a little concerned we didn't really think that much of it. It was only when I went down to find out what was happening and when we could go home, i was met with a a group of very concerned medical staff, crowded round an incubator all looking very concerned and having animated discussions. They advised me that they were tyring to get an Intensive care bed and that we would be transferred to Leeds general Infirmary, I didn't really take in what they were saying, it just didn't make sense.
How serious is it? i asked, "expect the worse" they said.... Words, no parent should ever have to hear.
Within an hour or so the embrace team arrived, Leon was placed in the space age pod and blue lighted, we followed, i don't remember the drive or much else to be honest.
The next few days are a blur, Leon was in HDU for a few weeks and in hospital for quite a while.
He was Diagnosed with Tetralogy of Fallot, ASD, pulmonary stenosis and a PDA.
At six months old he underwent a 14 hour operation to repair some of the main issues and has had further procedures, all of which documented on the blog http://www.little-leon.blogspot.com and elsewhere.
We were lucky, yes, lucky. Leon has survived and, whilst he will need more surgery. he is in reasonably good health. The harsh reality is that Congenital Heart Defects are the biggest child killer of all, more than all the cancers put together, but get relatively little funding. CHD is more common than you think, Approx 1 in 100 kids will have some form of a CHD, Leon's condition is one of the rarer ones, but, it is more than likely you will know some-one who is affected by it.
Help us to raise awareness, wear Red on Friday 7th, Share this blog around during the week, don't be afraid to ask questions about it. If you can spare a few quid donate to either the CHSF, or message me and i;ll send you details,
Leon Says Thanks for all the support over the last three years...