Paediatric Cardiac Ward & Intensive Care Unit

It's HEART week between the 7th and 14th February 2024.

Thank you for taking part in raising awareness of Congenital Heart Disease by wearing red and/or hearts throughout HEART week or specifically on HEART day (Friday 2nd February).

Alongside the boys amazing nursery, Sunflowers Smile, our hope is to raise as much awareness as we can and if possible raise some funds for the Children's Cardiac Ward and Children's Cardiac Intensive Care Unit at Leicester Royal Infirmary. Both Lando & Remy have and are treated by the amazing cardiac teams based here and we'd love to provide something special to the families who often spend many weeks and months living in a hospital with their very poorly babies/children.

Our aim is to raise enough money to be able to purchase Tonies boxes and Tonies for all 17 beds on the Cardiac Children's Ward and the 12 beds on the Children's Cardiac Intensive Care Unit. Any remaining money will be donated to Heart Link Children's Charity, who are just incredible at supporting the ward and unit from lifesaving equipment to tea and coffee for parents.

£79.95 buys x1 Toniebox + Creative-Tonie £14.95 buys x1 Tonies Character (Currently on 5 for 4)

07 – 14 February 2024 is HEART WEEK - did you know that;

*1 in 100 babies in the UK are born with Congenital Heart Disease (CHD)

*In around 33% of cases, the CHD is detected prenatally

*Around 1,000 newborns leave hospital each year with undetected CHD

*More than 300 infants die every year in the UK from CHD

*When detected, many heart conditions can be treated – surgery survival rates are very high and 80% of babies born with congenital heart disease survive past the age of 16.

I myself fall into these statistics. I have congenital heart disease. It was serious and would have killed me had I not had open heart surgery. I have the “zip” (scar) running right down the centre of my chest to show for it and a 6-week absence on my school attendance record. Honestly, it was a way of life, hospital appointments, scans, illnesses etc, so it’s not something I ever really thought about and into adulthood it’s more just a pain that no one will give me life insurance, you can imagine the palaver when it comes to remortgaging. I’m not on any medication and I was signed off by heart specialists when I reached 16. I lead a completely normal life. I was lucky. I am lucky!

Since then, I’ve gone on to have 3 beautiful children. All boys, Nico, Lando & Remy. Although I’ve always known there would be a risk of passing on my dodgy genes, I wasn’t told to what scale until I was pregnant with my 3rd son Remy, when I was told there is a 50% chance of passing on my congenital heart disease … 50%!

All 3 of the boys were born with congenital heart disease. Nico has a small hole that will only cause him a problem if he decides to be an astronaut. Now, I may be wrong but early indicators don’t point towards a career in space.

However, when Lando and Remy were born, no one knew they had life-threatening heart defects. I wasn’t part of the 33% of cases diagnosed prenatally and because of my heart condition I even had additional specialist foetal cardiac scans during all of my pregnancies.

Lando was born in July 2021, with several heart conditions, one of those conditions being the same as mine (there’s the first of that massive 50% I was blissfully unaware of). Each condition on their own can have their complexities but together, it was something else entirely. Lando passed away in September 2021 at 10 weeks old after a 6 week stay in hospital enduring a cardiac arrest and open-heart surgery both causing catastrophic brain damage.

Remy is my bonus baby, a complete surprise. Like Lando, and to my absolute devastation, he also has several heart conditions. Remy was born in April 2023 and in the 9 months following his birth he has already endured two open heart surgeries and let me tell you, doctors weren’t too optimistic with the outcome, nor were we, I mean you wouldn’t be, would you! Remy will require many surgeries and interventions throughout his life but each one is saving and prolonging his life, for how long, we have no idea. Hopefully he’ll follow in my footsteps with his guardian angel by his side with his only challenge being educated on passing on his dodgy genetics and getting life insurance.

So, why am I sharing this with you … it’s simple, to help raise awareness of Congenital Heart Disease and the impact it has for so many babies and their families across the country.

Thank you so much for taking the time to read, thank you for getting involved and thank you for donating. Next time we're in hospital for Remy, I'll go around taking pictures of all the Tonies we're able to donate. Please know from the bottom of my heart how truly grateful I am ♥