A Dad’s POV on VSD

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...

"Our 3 month old son has collapsed. He's unresponsive and has gone floppy" The words choked out my mouth as I desperately rang 999 for an ambulance. It was 23rd December and only 5 minutes before had been fun and laughter as we all excitedly met my parents-in-law at the train station and walked home, pushing Sebastian in the buggy, with discussions all about Christmas and the fun planned for the big day, only 2 days away. Sebastian had had a chesty cough for a few days, and we'd had a conversation just that afternoon that given it wasn't improving we should see the GP the next day, especially given that Christmas would close everything down except emergency cases, and we weren't one of those. Our child was healthy, we'd been told by numerous professionals; despite his lack of weight and other signs things weren't quite right! It had been heavily inferred we just weren't feeding him right, and his constant tiredness when feeding was down to us...

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 cl...