It’s that’s time of year again. Where we are helping to support the Children's Heart Beat Trust, which many of you will know supported myself and Niamh through the worse time of our lives.

Just a quick recap. On the 22nd of October 2021, we took Harley to the doctors for her 3 month injections but explained she hadn’t been herself and were were told that she needed to be rushed to the RVH, Where she flat lined in the resuscitation room, the team was able to bring her back round but found her heart function was severely poor so she needed to be supported with inotropic drugs and mechanical ventilation and stay in the paediatric ICU. We found out the left side of Harley’s heart was only working at about 3% and that she was critical. Minutes, hours, days & weeks past and our wee superhero was getting stronger and stronger, to the point where Harley got moved to Clark Clinic and was almost home. But it wasn’t to be and on the 3rd of December Harley deteriorated and had to be rushed back to the PICU and after 1-2 days we were told that they could no longer keep Harley stable and that we need to be transferred to The Freeman in Newcastle Upon Tyne. 

We arrived some day in December (can’t remember exact date), Harley underwent left ventricular device (levitronix) implantation on the 17th December 2020 and was added onto the urgent heart transplant list and it seemed to be working, and she had progressed towards extubation and self breathing within a week and was converted to a Berlin heart which is another form of heart support but then she started to deteriorate again and needed more support so she ended up on BiVAD basically one pump for each side of the heart but still it wasn’t enough then she placed on ECMO (this if basically full blown life support there is nothing after that). Within a few days out superhero started to fight back and got off ECMO. She was stable for a few weeks n was being slowly taken of the meds. On the 29th December 2020 she suffered a brief cardiac arrest that required CPR as a result of the levitronix device malfunctioning (this is always explained as a risk before having the device inserted) We then discovered this had caused Harley to have a stroke which lead to bleeds on the brain and seizures and brain damage. On 31/12/20 Harley faced the most biggest battle and still showed no fear. Unfortunately, the brain injury was far too great and from a new urological point of view any potential treatment was not in her best interest as the prognosis was not compatible with life . she developed hydrocephalus and it was from here that everything came crashing in around myself & niamh. And then the medical team came to the conclusion that the best thing to do for Harley was to turn the life support off and let her receive comfort care and she fell asleep in mummy & daddy’s arms, so on the 27th of January they turned of the life support… But Harley wasn’t ready to go she held on for 40 hours this was her showing not only myself & Niamh her strength but the world, and telling us that we are able to do anything. Then on the 30th January our little hero fell asleep in our arms 💖

Throughout the worst time of our lives, The Children’s Heart Beat Trust where there to support us with everything. As like last year we do this mile a day in memory Harley and to help raising money for an amazing charity that help so many heart families going through what we went through. They make sure no heart families are feeling alone and support tirelessly no matter what.