Vicki Cockerill - NICU MUM Blog

Imagine a world where a zipper scar is recognised for the bearer being a #CHD hero and what that really means. When I tell someone about Elijah's heart condition (Tetralogy of Fallot a severe congential heart defect) I tend to guess their reaction. After four years we tend to be met with the same response. One that is slightly uncomfortable, one that sees them struggling to find the words after we tell them that we watched as our six month old baby was wheeled away into theatre, not knowing if we would see him alive again. Perhaps a glimmer of relief that it isn't their child that will face struggles, future surgeries, restrictions and life long appointments. We tend to be met with sympathy for our situation, which is greatfully recieved. Some have a relative or a friend they know that CHD has also resided in so have an insight into what our lives are like. Some ask questions which I jump at the chance of answering. Asking me questions about Elijah's condition me...

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 ...