Welcome to a CHD VSD blog

Well hello there. I'm a Dad. This blog is about my son's Congenital Heart Defect (CHD), a large Ventricular Septal Defect (VSD) and associated issues arising from it and how he's coping.
It's also about me, and how I as a father and a man have coped, and am coping, mentally and emotionally with my son's CHD issues.

A brief timeline to get you up to speed:

September 2016: my son was born.
Over the following months he failed to feed or put on weight as he should.
December 23rd 2016 he collapsed at home, got blue lighted to hospital. Was found to have Bronchiolitis. Spent Christmas in hospital.
December 26th: We were told he had a loud heart murmur and were referred to a specialist consultant.
January 2017: He was confirmed to have a large VSD.
February 2017: He had open heart surgery (OHS) at Evelina, London to patch the hole.
Over the next year scar tissue grew within the heart, slowly starting to block it, causing him to struggle with basic things like climbing the stairs.
July 2018: He had a second OHS to cut back the scar tissue.

Over the coming weeks and months I'll be posting on each of the events above, talking in detail about what we went through on each occasion. I'll also talk about what happens now as my son ventures into nursery and beyond...


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You're to blame!

I am now 5 years into my CHD journey with my son. I am a member of a few CHD related charities and their forums on social media. One thing that keeps coming up is new parents of a CHD child reporting the same thing we went through; namely so-called professionals saying directly or indirectly by inferring, "it's your fault!!" This is just not acceptable. This is a failure by the professionals to do their job or be correctly trained. Are you one of these professionals or training to be one of these: midwife or health visitor? If yes, then this blog post is aimed directly at you! Why? Because we the parents are not to blame; you are! After our son was born he had undiagnosed tongue tie and more seriously an undiagnosed large VSD. The former would be a false positive for the latter in our case. As a result of these issues he struggled to feed, fell asleep quickly while feeding due to the effort required and lost weight or failed to gain weight accordingly. And we were regular
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Will lessons ever be learned here?

If you were an NHS hospital, especially one trying to drag yourself out of being a failing hospital put into special measures, and you were offered a free Pulse Oximetry Machine through someone offering to raise the funds to buy one, you'd be grateful, right? You'd welcome the opportunity to not spend money from your already over stretched budget, right? Being a hospital coming out of being put into special measures and having been rated poorly for the quality of your care, you'd certainly take the chance to give your staff the latest training and equipment so they could offer parents a simple, painless and relatively quick test to check for undiagnosed CHD in their newborn; thus improving the quality of your hospital's care.... right? Well, yes you would, dear reader, obviously, but that's because you're a rational person not in complete denial that the service you're offering is below par and failing in its basic remit, despite having been put into s
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