I've been inspired by my friend's baby boy Jake. Here's their story:
Three months before he was born, Jake was diagnosed with Hypoplastic Left Heart Syndrome, which in simple terms meant that the left side of his heart was too small to pump blood around his body. We were told that Jake's heart could not be repaired, but he could undergo a series of operations to ‘re-plumb’ the heart and arteries to allow the good side of his heart to do all the work. He will need lifelong cardiac care and faces further possible complications, but without intervention he was unlikely to survive more than a few weeks.
The hospital introduced us to Little Hearts Matter, a charity dedicated to children with heart conditions like Jake’s. We've only scratched the surface of what the charity can offer, but they've already provided us with a wealth of information and put us in touch with families going through similar situations, both of which we’ve found invaluable.
Jake was born on 27 June and had his first heart surgery three days later. Seeing him afterwards was a shock - he had over a dozen tubes and lines in him and the operation caused his body to swell. After a month in intensive care, Jake’s looking more like himself again. He now needs to get strong before his next open heart surgery in a few month's time.
Whilst we don't know what the future will bring for Jake, some of the challenges that similar babies will face include:
● Increased mortality rates (current figures suggest 70% of HLHS babies make it to 5 years old)
● Unknown life expectancy
● Sudden cardiac arrest
● Heart failure, requiring a transplant
● Blood clots, leading to stroke
● Breathing difficulties
● Feeding difficulties
● Delayed learning
● Difficulties with simple things like playing, exercising, going on holiday, obtaining travel insurance, obtaining life insurance
Little Hearts Matter aims to help families through these challenges and more. Any support you can give them to continue their great work will be warmly welcomed.
