Hugo's Journey

Hi my name is Hayley, I am fundraising for our 4 month old son Hugo.

Our son Hugo was born with a congential heart defect. He was diagnosed with a complete unbalanced AVSD and borderline hypoplastic left heart. At only 4 days old Hugo underwent his first open heart surgery, after Hugo's surgery he developed what they call chylothorax leak and became very unwell with massive drain losses, his drain losses were so bad, the cardiologist and surgeons couldn't figure out why, to the point myself and his father Tyson where sat down and told they where going to do everything they could but, there was a chance that there was nothing they could do, there's a chance we could lose him. No words any parent ever wants to hear. However 2 days later, the light at the end of the tunnel started to shine and things where taking a positive turn, one surgeon told me they don't know what they did, but it worked, it is a miraclous recovery, and from there he got better after a 6 weeks stay in picu, we finally got to the ward. 3 weeks after that, at almost 3 months old, we finally got to take our boy home. He loved being home, he was happy and smiley and loved being with his other siblings, everytime he seen us his little face would light up. Developmentally, everyone was shocked how good he was actually doing, he had just started to giggle when we bought him in for his echo scan check up on the 21st of April. Our world came crashing down again to find out his heart wasn't doing so well, not only is the left side of Hugos heart small, but so are the structures, causing high pressure in the left side of his heart and the blood was not flowing as it should, we where told he would need another surgery. The cardiologist was uncertain on what surgery that would be. So he decided he wanted Hugo to undergo a diagnostic catherter procedure to measure the pressures, etc in his heart to determine which surgical option would be most suitable. So, we went home and enjoyed our time with Hugo, until we came back to sydney on the 21st of May for Hugos catherter procedure. Believing it would be a day procedure and we would go home the next day and await a decision and a date for surgery, however that was not the case. During the procedure there was an issue with the ventilation, some blood lose occurred and the doctors where concerned that Hugo needed a little more time with the breathing tube. They sent him up to ICU believing it would only be a few hours of recovery, once again that was not the case, once the breathing tube was out and replaced with oxygen prongs, he slowly started to deteriate and no matter what anyone did, he was not improving. After 2 days, and concerns rising with Hugo showing signs of heart faliure, the team decided they needed to re-intubate Hugo and take over

his breathing to give his heart a rest.

We were sat down by Hugo's cardiologist and told his cath results and not only where his left structures small but there seemed to be an another issue with his heart muscle not relaxing. There are now concerns that surgery may not be helpful, however after a big meeting between surgeons and cardiologist they decided they had to do something and soon, if surgery was not done, we would likely lose our son. They believe doing surgery on his valves may help blood flow and pressure, however they can't say how much it will actually help until after.

Hugo is undergoing his second open heart surgery on the 30/5/25 where they will be doing what they call a Ross procedure on his aortic valve and possibly replace his mitral with a mechanical valve.

During this time, Hugo's Dad, Tyson's place of employment sold. And although there was promises of the employees being kept on, not one of the employees were contacted and unfortunately there where empty promises. We are not the people who like asking for money, hence why the first time we never did a go fund me, we really struggled with the idea of doing this, however with only a 2 month break between being away from home then going back and having medications and medical supply bills etc this time around we are more worried about making sure rent etc continues to be paid. So we have a home to go back and to help provide for our family while we are here with our son. Unfortunately government agencies like centrelink have not been very helpful in this time. So we are just asking for some assistance during this hard time, until we can get home and get back on our feet. In the meantime we will just be able to focus on our baby and being here for him.