Vicki Cockerill - NICU MUM Blog

Blogging for Tiny Tickers  For those who regularly read the blog, you will know that I have shared my story and raised a lot of awareness for the charity Tiny Tickers . They are a frankly amazing charity which is striving to help diagnose babies with undetected heart conditions and supporting families when they are getting that life changing diagnosis. We used their THINK HEART campaign when we went for a foetal medicine scan with Harlow to check whether he too, would have CHD or not. One of the most frequent questions we get about Elijah is why his condition wasn't picked up in the scans. Why it wasn't until 12 hours post birth that he was having cyanotic episodes and was admitted to NICU to be diagnosed. The answer? No one knows, it just didn't show, get picked up and actually we were told the majority of TOF patients are diagnosed post birth. Here he had a scan and was then diagnosed with Tetralogy of Fallot when we received the diagnosis it felt as though ...

Before Elijah was born, I didn’t have any experience with heart problems, other than the odd family member having a ‘dodgy ticker’. I didn’t really know what this meant or what could cause it. I certainly didn’t know what Congenital Heart Disease (CHD) was. Soon, that was about to change and I was going to become somewhat of an expert on the subject. When Elijah was born, 12 hours after birth he began having what we now know are called ‘Tet spells’, or, ‘dusky episodes’. Changing colour to a bluey/ purple colour and then regaining his normal pink colour. Upon his admittance to NICU he was diagnosed with a critical CHD called Tetralogy of Fallot (TOF). According to the NHS 1 in 111 babies born, are born with a CHD, this is also the cause of 1 in 13 infant deaths. Nothing was picked up on my scans, and we even had extra ones, all through the pregnancy we were told what a healthy heartbeat Elijah had. Never in a million years did we think there was something so wrong with our baby’s ...

A bit of background, Elijah was born with a Congenital Heart Defect (CHD) called Tetralogy of Fallot (TOF),  this means there were four structural abnormalities wrong with his heart. These were repaired, via open heart surgery at Great Ormond Street in April 2015 when he was 6 months old.  Please be CHD aware 1 in 100 babies are diagnosed with some form of CHD. To mark Elijah's two year heart anniversary, I will be sharing some CHD/ heart related posts of our journey that have appeared on the blog through the last year over on the Honest Confessions Facebook page this week. Elijah and Alice celebrating two big occasions this week. Elijah, this week marks two big occasions, your friend’s Alice’s second birthday (Happy Birthday Alice!) and something else that you are likely not to remember. It won’t make much sense to you now, but one day it will. This week you will see Mummy and Daddy look at you funny a lot, and you will get extra cuddles and kisses and you ...

For those that follow me on social media will see that this week, I was faced with some criticism for a post I had written. The post was featured on The Mighty a few months ago, and has been shared via some heart/ CHD sites too. The post which you can read here: ( https://themighty.com/2016/12/congenital-heart-defect-people-asking-if-child-is-fixed/ )   was written about when someone asked a simple question about Elijah. Is he fixed? I politely answered, but in hindsight something was bothering me. It was the terminology. It was the realisation that no, my son will never be fixed. So, I did what I do with most things, I wrote to process how I was feeling at the time. It was not a discussion, it was not instruction to all other heart parents on how they should act when someone asks a question. I didn't demand a revolution that we all protest when someone dares ask us a question. It was a post about a mum who was struggling to come to terms with the reality of her son's conditio...