Brodie on his Heart Transplant journey

Welcome to Brodie's GoFundMe page When Brodie was 12 days old, he became critically ill and was rushed to the Royal Children's Hospital. It broke our hearts, as we were told to prepare to say goodbye. However, Brodie’s a little fighter and wasn't going to give up that easy. The medical staff worked tirelessly to stabilise him and after extensive testing they decided the only way to save him would be a heart transplant. We have been at RCH since mid-November and are currently waiting to be put on the transplant list. In the meantime, Brodie has a machine called the Berlin LVAD that helps support the left side of his heart. Once we are on the list, we have been told it could be roughly a 12 month wait in hospital to find a suitable heart for him. (because he is so little) We want to be completely transparent. A lot of Brodie's medical treatment is covered under Australia's public healthcare system (thank god!). However, there are a lot of other associated costs that come with living at the hospital full time. Things like parking, petrol to and from the city each day and other everyday essentials. However, the money we raise here will give us the most important thing of all, time with Brodie. We make sure someone is always by Brodie's bedside, in an attempt to make his experience in hospital as positive and "normal" as possible. The money we raise will reduce how many hours/days that I will need to go back to work, allowing me to spend more time supporting Brodie and giving my husband Tim a break from the hospital. We appreciate any amount you wish to donate, but ask that you do not donate more than you can afford. You can donate $5 to shout us a coffee, $10 to cover a day of parking so we can spend some time together as a family, or choose your own amount that you wish to donate. For those of you who have already supported us in other ways or do not wish to donate, you can still help by sharing this page within your own networks. Whatever you decide to do, we are just grateful that you cared enough to read this far. And for those of you who would like to know a bit more about our story, please feel free to read below. All our love, Simone, Tim and Brodie Our Journey so far…. On the 19th of November 2022, we went for dinner at Brodie’s Uncle Brad’s house. Everything was pretty normal; Brodie had his evening breastfeed and was a little gassy but otherwise fine. In the early hours of Monday morning, when he was due his next feed, I woke him up and he started crying. I couldn’t get him to latch and he’d always been really good with breastfeeding up until then. I tried to calm him down for over an hour, to the point where my husband came in to check if everything was alright. I was pretty distraught by this stage, and we thought back to what we were told to do in the hospital when he wouldn’t latch and that was syringe feed. So, we got a feed in but he sounded exhausted. We started googling and everywhere said “baby’s just cry” but something felt off. First thing in the morning, we started calling the resources in our Green book. We tried the breastfeeding association, the hospital where we gave birth and our Maternal Child Health nurse, because our gut told us something was wrong. While I was on the phone, Brodie finally latched and had a feed but he had this little cry that we’d never heard before and we felt something still wasn’t right. Our MCH nurse said it could be nothing, but because his urine/bowel movements had decreased and we found a change in his behaviour, it might be worth getting him checked out. By this stage we were already dressed and had decided to go straight down to our closest paediatric hospital. We got to Sunshine Hospital and there was a line out the door. But the amazing people ahead of me, saw me holding my 12-day old, crying baby and told me to go ahead of them. (I will be eternally grateful for the kindness of those people) While the triage nurse was getting our information, she heard the little cry we were talking about and asked me to come into the emergency room while Tim finished off the paperwork. This is where Brodie finally let go. He went from having 2 people working on him to 26 people trying to stabilise him. Over the next few hours, he rapidly declined and all his organs started shutting down. Doctors were writing on bed sheets, nurses had reference texts out doing dose calculations for a baby so small. They were absolutely incredible, but we knew it wasn’t looking good. A kind doctor came over to us with a little specimen jar and told us it was a lock of Brodie’s hair. (they had to shave part of his head to get vein access because they couldn’t get bloods from his arms or legs) They stabilised him as much as they could but said it looked like he had a very enlarged heart and would need to go to RCH where they have a cardiac ward. We got an emergency PIPER (ambulance) transfer and when we got there, people were holding doors open to get us up to ICU as quickly as possible. We got to his room full of medical staff and a nurse saw me, steering me to a private waiting room while they worked on him. It was then that I finally broke down crying. Tim’s brother Andrew had driven him up behind us, and Tim rushed up to meet me in the waiting room. A few hours later, a doctor came in to give us an update. I can still remember the sound of his voice saying “he is a very sick little boy”. They told us to prepare ourselves, as he may not make it through the night. Brodie did not give up, he is so strong, and continues to amaze us every day. We spent several weeks in ICU where he was heavily sedated - attached to breathing tubes, catheters, IV medication and other various supports. His organs started to regain function, liver, kidneys, lungs, got stronger each day. Everything except his heart. He was diagnosed with a condition called Dilated Cardiomyopathy which meant his heart couldn't pump blood around his body effectively causing the other organs to shut down. (a condition we THOUGHT we had avoided by going through IVF – but that’s a whole other side to our story) They slowly tried to wean him off the machines, but ultimately decided his body was not strong enough to support itself. We were told Brodie would need a heart transplant. As you can imagine, finding a donor heart will take time. So, to keep his body strong in the interim, Brodie was put on a machine called an LVAD (Left Ventricular Assist Device). The particular one he is on is called a Berlin Heart which is able to be used in babies. This helps pump blood around his body and supports his heart so it doesn’t have to work so hard. He is getting stronger each day and we are hoping now that he is looking more stable and has put on some weight that he will soon be eligible to go on the transplant list. From there, all we can do is wait and try to keep his body stable, because there are risks that come with being on an LVAD too. Unfortunately, Brodie has already experienced 2 of these complications, infection and stroke. Luckily, the doctors don’t believe he has any permanent issues from the stroke, but that’s something we will learn in time. So, that’s a bit about our story to date. There’s a lot more to tell, but I don’t want to overwhelm you with all the details. Thank you for reading and for those of you who have been on this journey with us, we cannot thank you enough for your support. We feel so grateful to have such wonderful friends and family, we wouldn’t be able to get through this without you. - Simone xx