On the 22nd of May 2024 my beautiful daughter Etta was born in Bristol. Etta was born with a complex congenital heart defect called hypoplastic left heart syndrome, a defect that only affects 1 in 5000 babies. This diagnoses meant that the left side of Ettas heart did not develop, meaning she has half a heart. In order for Etta to live the fullest of lives, she needs 3 open heart surgeries. These surgeries are paliative and will never cure her condition but will allow her heart to work at its best for Etta. Etta had her first open heart surgery at only 3 days old. She encountered several complications post operation which resulted in several more unexpected surgeries but she fought her way to recovery and we left hospital over 3 months later. Ettas next open heart surgery was in January 2024 when she was only 8 months old. Ettas 3rd open heart surgery is due in the next 2 to 3 years, or whenever her body tells us that she needs it. What we as a family are going through is unimaginable for many parents and families and from the 20 week scan at pregnancy we have been coming to terms with everything and making the most of family life. Little hearts matter is a charity that advocates for people like Etta who are living with single ventricle heart defects: The charity have supported us so much from Ettas diagnosis to today. They spread awareness of hypoplastic left heart syndrome, and teach people the struggles that those living with it have, so that people are able to help and understand their limits. The charities help ranges from helping families like ourselves with administrative paperwork (such as DLA) to giving birthday cards to our little ones to know they have another friend. The charity also hosts activity weekends for families like us so that we can meet others who are going through the same as us. These events and meet ups are invaluable because it is the families that are going through the same as us who truly understand the roller coaster journey that we are on. Little hearts matter helps us as a family not feel so alone on a journey that is now our new, beautiful life. I am raising money for them, to say Thank you from us x
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