Baby Leo’s funeral and PICU funds

After a long 4 years of trying to get pregnant, numerous tests, medications and a cycle of IVF, Leo was finally conceived. At our routine 20 week scan we got the devistating news that something was wrong with his heart, since it was a Friday afternoon we couldn't see a specialist until the following Tuesday. That day our world broke and we was given a diagnosis for Leo of Hypoplastic left heart syndrome, there would be numerous scans to follow, a amniostisis test and atleast 3 surgery when Leo was born. We were lucky enough that our amnio came back fine but 2 scans later we were told Leo also had a intact arterial septum. Is HLHS wasn't rare enough this was something even less heard of with very few known in the UK to have the 2 condition, but still we thought positive and had trust in our hospital. Due to the conditions and needing immediate surgery at birth Leo was only of the only babies to be born at the Freeman hospital via c-section due to there being no maternity units and a full team coming from the RVI to deliver him. Leo was born on the 1st August 2019 at 10:04, they had no time to weigh him or for a cuddle or anything before he was took into the adjoining theatre to start his surgery. It was a long wait as he didn't come out of theatre till half 5 where we were told to expect him on ECMO (life support that helps the heart and lungs) due to complications in surgery. Our little fighter proved them wrong and came back fighter without ECMO being needed and even though there was complications the surgery was a success. The first few days Leo fought so hard and did so well coming of machines and lowering his medication but on day 4 everything changed. Leo's saturation levels dropped a few times and every time it became harder to get them back up. We then got the devistating news a few days later at 6 days old they suspected Leo had lymphangiectasia, a lung condition which is caused in the womb by his heart conditions. Again this made his case even rarer and our perfect little boy was one of 50 cases in the world ever. PICU tried everything possible for our boy with changing positions, giving him steroids and giving him medication brought into the hospital specially for him. None of these worked and on the 14th August we were told by our team there was nothing else they could do to save our boy. This was heartbreaking news for us as parents and as people who had fought for so long through infertility and IVF to bring our boy into the world and to have to let him go so soon. On the 14th August we spent the day making memories with our boy, washing him, dressing him and holding him for the first time. Despite how poorly he was and how much he struggled our amazing boy carried on fighting and when we were so scared that us holding him would make him struggle further he surprised us all and was so content. That night we said our final goodbyes and removed his ventilation and medication to let our baby drift off in our arms and finally be able to rest. Now we would like some help to give him the best send off possible and show our little fighter how proud we are of him and how loved he is.

With any extra funds raised that we do not need to put towards his send off we will be donating to PICU at the freeman hospital. We couldn't of asked for a better team to look after our boy, they really did do everything the could to save him. Not only that but they helped to look after us during our time there and have continued to help us since. They do this on a daily basis for thousands of families every year and the work they do is just amazing. So thank you to anyone that works on PICU and the specialists, consultants and surgeon working along side them as without them we wouldn't of had Leo for as long as we did.

Any help will be greatly appreciated ❤️Xx