5th of Feb is heart day… Something a year ago I knew nothing about. I knew next to nothing about heart defects the only thing I knew was some babies were born with a hole in their heart and that’s it. I didn’t know that 1 in every 100 babies will be born with a heart defect of some kind and I didn’t know that my baby would be that 1 in 100.
A year later I know more about heart defects that I ever wanted to know. Tetralogy of fallot something that until almost 10 months ago I’d never heard of. Basically it means 4 things wrong with the heart – 2 holes ASD (atrial septal defect) a hole that should close at birth a VSD (ventricular septal defect) a big hole between the two pumping chambers of the heart mixing blue and red blood. Right ventricular hypertrophy the right side of the hearts muscle thickened due to it having to work harder and an overriding aorta the main artery on the heart in the wrong place because of the VSD. Worst part of this particular defect is its only correctable by open heart surgery. So that meant a major operation on my 5 month old baby. Before the surgery it meant a nurse checking oxygen sats weekly, weekly weigh in’s with a Heath visitor and monthly hospital visits for ecg’s and echos. All the things you would expect to see on an episode of Holby city not real life.
I joined groups on Facebook to get more Information and read other people’s stories, I googled the diagnosis every night and hoped every night that the hospital had got it wrong. Sadly not. I lived through months of worry and sleepless nights, week after week and month after month of constant check ups. But nothing could have prepared me for the actual operation. You never expect to be told your baby is sick but if there’s one thing I’ve learnt its that my son is much stronger then I ever thought possible. Much stronger then I ever was. He had major heart surgery almost 5 months ago and bounced back to being a healthy baby how he should have been born as. I’m so proud to be a heart mum to my little superhero ❤️