A Dad’s POV on VSD

"Hi John, we've found something..." Those words ring around my head still. Sitting down to write this post my mind is in full depressed mode. I can't stop thinking about it. I put Verdi's Dies Irae on loud, apologise to the neighbours via FB and begin writing! Sebastian had his 6 monthly check up last week. Due to Covid19 restrictions in place there was still only one parent allowed to attend and as I had attended the last 2 this time Julie attended. I dropped them both off at the hospital and then myself and Grace came home to do some baking. Although Sebastian has been a bit more fatigued of late we'd put that down to starting school and everything around that. We didn't think for a moment there might be anything else causing it. Halfway through the baking my phone rang. It was Julie. Dr Bell wanted to talk to me. I put it on loud speaker as I wiped my hands of cake mix. "Hi John, we've found something..." Those words stabbed at me. The tun

My goodness, its been a long time since my last blog post! But then just a bit has been going on in the last few months for all of us, hasn't it?! I am considered a key worker as I work in a supermarket, so although there is a lockdown and plenty of people are off, I am still working full time and my spare time is, together with my wife, now filled with schooling my children, or playing with, my 2 children to keep them entertained etc. during lockdown. Anyway, back to the blog: I'd got to the point where I had arranged a meeting in April with my local NHS Trust heads to discusss issues around initial failings in my sons care and low CHD diagnosis in general. For obvious reasons this meeting has been postponed until lockdown is well and truly over, and indeed the NHS is not under the strain it currently is, which realistically will probably be spring next year, at least. What I would especially like to focus on now is the positive experience we have also had in the NHS. Like man

I cried again! I know, what am I like? The simple fact of the matter is, when you've struggled with something mentally for 3 years, in addition to other issues that have effected your mental health before that, adding to your mental health burden, to finally have a letter confirming and acknowledging you were right all along and failings in care did occur, it's an emotional moment! It's a great weight lifted. Our complaint to our hospital regarding the failures in care in Sebastian’s first 3 months has not only been received, but admission of said failings have been accepted! We are now in the process of arranging a meeting with some senior people there to discuss how to ensure such failings do not occur again and hopefully to convince them to accept a pulse oximetry machine that we’re willing to raise funds to purchase, and also to be willing to accept specific CHD training, again funded through the same charity, for their sonographers to help improve CHD diagnosis at

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

I welled up and there was nothing I could do to stop it. It comes from the gut, from the heart. From buried emotions you try to hide, yet everyday things can uncover them as though they're in plain sight! And what's more it was a double whammy of emotions... One thing having a seriously ill child who's been through 2 open heart surgeries has made me become is emotional! I know, I know, I'm human, I have emotions, I feel. No, these emotions are completely different to any I have felt before, when I was 'normal'. By normal, I of course mean going through life with nothing major other than the usual death of grandparents etc. to deal with. That possibly sounds terrible, but I hope you get my meaning? You do, don't you? My parents had various pets when I was a child and it's the perfect way to prepare children on how to deal with the emotions of death, as pets have a relatively short life span, so when the bigger emotion of a grandparent dying inevitably com

My last blog was on what happened on the day Sebastian collapsed at home and had to be rushed to A&E after contracting what turned out to be Bronchiolitis. However this was as a result of 3 months, post natal, of failure to correctly diagnose what he actually had, namely a large Ventricular Septal Defect. Therefore I'd like to talk about those 3 months leading up to that day. I will just say the pregnancy was normal and no issues were picked up at any scans. This is quite normal for some VSD due to the size and position within the centre of the heart. There are ways more sonographers can possibly spot these things and a charity called Tiny Tickers are doing sterling work in sending a special doll to sonographers to help teach them how to spot these things. After the birth all the usual new born checks were done; sex, weight and health in general. The paediatrician didn't find anything out of the ordinary. We subsequently learnt this is entirely normal for a VSD, the t