Dawn-Louise A

21 April 2021

Story Written 2021

Dawn-louise was diagnosed at my first scan at 22 weeks and 3 days, with only half a heart, and the weakest side at that, a condition called Hypoplastic Left Heart Syndrome (HLHS) in which the left ventricle of her heart did not form. 
I was given 3 options, late termination, compassionate card (in which she would pass away naturally before turning a week old) or a series of palliative open heart surgeries, that although would prolong her life, would not be a fix or a cure. Dawn-louise and I spent the first 6 months (197 days) in hospital, she had open heart surgery at 6 days, 3 months, 6 months and 4&1/2 years old, as well as a few cardiac catheters and an emergency bowel surgery, due to how tired her body was having only half a heart, she had to be fed via a NG (nasogastric tube) for the first 8 months of her life. She had a further open heart surgery at 4&1/2 years old, which sadly did not give us the desired outcome, But has bought us more time.
Dawn-louise is currently 10 years and 9 months old, and has a life expectancy of 14 years of age, by then we could be looking at heart failure. She has lived her life with only 75-85% in oxygen, which resulted in her being cyanosed ( a blue tinge to the hands, lips and feet).  Dawn-louise has many everyday struggles and is on life long medication, she also gets 3-4 ambulances every year as her body cannot cope with illnesses that affect the lungs, due to this she is also high risk and clinically Extremely vulnerable for covid complications, which has meant she hasn’t left the home since March of 2020, and wont till spring of 2021, she is currently partaking in school via a robot called an AV1, which is placed on her desk at school, and controlled by her through an ipad. 
Despite Dawn-louise’s struggles, she is determined to make the most of everyday, she loves to sing, dance, play the piano and ukulele, she is a huge disney fan, loves playing games on the switch, like animal crossing, and mario kart, she loves to draw and paint, her recent  obsession  is water colour paint, she loves dogs more than any other animal, her favourite is the blenheim cavalier, she loves to travel and see new places, and is eager to learn new things, in October 2019, she got to go on her wish trip to disney world florida, and stayed at the wonderful give kids the world village.
Dawn-louise is a happy, smiley, goofy girlie, who never ceases to make those around her laugh.

Continue reading...