‘It was one of the most difficult and uncertain times in our lives’ – Daniela’s Story
We’ve relied on so much support from LHM over the years. LHM were crucial in the antenatal period, providing advice on what to expect at birth, in the initial operations, and the life long implications – including the really positive aspects. We firmly believe that half a heart does not mean half a life. Suzy called us personally during this time and we will be eternally grateful for the advice she gave us, and the dvds and information packs that LHM sent us.
LHM gave us advice on what to expect when our newborn, Oscar, had his first surgery back in 2014. It was a very tough time, we weren’t initially sure of the hospital would be able to operate on Oscar’s heart due to the multiple issues he had but LHM provided us with questions we should ask about the various routes that the surgeons could take if they decided they could proceed. This gave us a greater understanding of Oscar’s surgery. It was one of the most difficult and uncertain times in our lives but it was also helpful knowing that others could understand what we were going through and that we had prepared ourselves and done everything we needed to do to understand what was going to happen to Oscar in surgery.
Then a few years ago we received a lot of help and support through the yearly LHM conferences, calls with LHM and group forums regarding transplantation. It’s opened up our understanding of the situation we found oursleves in (Oscar was placed on the heart transplant list) and gave us a lot of helpful advice and knowledge. We’ve made friends through the social media groups we’ve been part of, offering and seeking advice from fellow warriors families and those we have met through the LHM conferences. It’s great to feel that you are on a journey together with other families and LHM, and helping each other, rather than facing things alone.
More recently, LHM have helped us with the Fontan journey because things had improved for Oscar and took an unexpected turn for the better. Advice sheets on what to expect in surgery and the recovery for our little man were extremely useful. It’s been hard watching our child go through something so difficult and not knowing what the future may hold but we’ve really seen the positive side of this surgery and realised how crucial it was for him in reducing everyday frustrations he was facing (due to breathlessness and issues caused by the limitations his condition was placing on him). Oscar was also on the MCT diet following surgery and we found lots of helpful recipes and information in the factsheets provided. LHM have helped Oscar on this journey. He was sent a get well balloon following his recent surgery. This cheered him up no end, which you can hopefully see from the photos we previously sent through.
We’ve also handed the LHM Filofax to Oscar’s school. This provides extensive information on how his condition will likely impact his schooling and learning, helping us to work with the school to adapt his learning experience to best meet his needs and help him to enjoy school. We have used LHM healthcare plan templates to assist us with producing documents for school. We have also followed LHM’s advice with filling in DLA applications, as well as other day to day challenges – including around food and exercise. This information and help gives us a great deal of confidence that we are doing the right thing for Oscar, often when we would otherwise be faced with a great deal of uncertainty.
We are forever grateful for LHM for everything they have assisted us with, for what they have informed us about, and for the ongoing support we receive. We really couldn’t do this journey without the charity.