Story
Our story:
On the 22nd of May 2022 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 2023 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.
What Ronald Mcdonald house charities have done for us:
The Ronald Mcdonald house charity is an amazing charity that has helped us immensely since Etta was born. In the first year of her life, Etta spent 6 months of her life in hospital. For approximately 3 months of this time we spent living at Ronald mcdonald house, in Cardiff. The house is located just 10 seconds away from the front door of the children's hospital so we were able to have a place where we could rest but still be close to Etta.
The house is so much more than a place to rest, it provides families like us a place of respite, a home away from home. It has a kitchen area where we could cook our dinner and have some normality, it provides several dining tables where we could meet other families going through a similar thing and also provides a spacious and relaxing bedroom and bathroom.
We spent Ettas first Christmas in intensive care and therefore spent our Christmas day and the month before and after living at Ronald mcdonald house. The house provided families with vegetables for Christmas Dinner and this allowed us to have a family Christmas dinner. The house provided us with gifts for Christmas day; a small gesture for some but at such an awful time, it made our Christmas day so special. Etta spending her first Christmas at hospital which could have been such a dark time was made so much brighter because of Ronald mcdonald house.
Ronald Mcdonald is an incredible charity and I am running for them to say thank you, from us ❤️