Deon E's quilt    (Quilt Closed)

Theme details

Vehicles - trains tractors trucks helicopter boats

Child Interests

Blue- light and dark (favourite)
Red
Green

Biography

Deon now aged 9 was diagnosed antenatally at our 20 week scan with Hypoplastic Left Heart syndrome, a congenital heart defect where the left side of the heart does not develop. This meant Deon would not survive after birth without intervention. We were given 3 options - 1. continue with pregnancy and do nothing after birth where Deon would have passed away within 2 weeks; 2. terminate the pregnancy or 3.surgery which would consist of 3 open heart surgeries which were not a fix or cure but would prolong life expectancy which we were told would be, after surgeries, late teens/ early twenties. Surgeries would be high risk and no guarantee of survival. We were told that Deon’s chance of even surviving birth were extremely low that he would be born blue lacking oxygen.

When Deon was born he was a fighter from the start, so we decided to go down the surgical route. His first open heart surgery was at 4 days old but complications followed with infection and low oxygen levels. We remained in hospital for the first 5 months of Deon`s life where we lived at hospital accommodation with our daughter Mia then aged 3 who attended nursery there. During this time Deon had 5 other smaller surgeries, and was solely tube fed as he was too tired to breastfeed or take a bottle. He was not doing well and the only option was to bring his 2nd surgery forward - this is usually performed around 6 months of age, but was undertaken at just 10 weeks old.

Deon seemed to recover well at first but remained in hospital, moving from a ward to high dependency units and children’s intensive care. At 14 weeks of age Deon suffered a stroke which we were told may affect his left side, speech and mobility, which it did. Deon finally improved and was discharged for home just after 5 months old. We left hospital with basic life saving training, a lot of medication, injections and feeding pump.

Deon’s stroke has left him with left sided hemiplegia, which has affected his walking. He wears an AFO, shoe raise and does daily physiotherapy exercises. His left arm is weakened but has improved over the years. Deon’s speech and communication suffered too. He used Makaton and gestures to communicate with us for many years but slowly he has used this less and less and uses words more, and with speech therapy he is making improvements every day.

We have had ups and downs over the years, hospital stays and big scares, but our son Deon is our hero. He has overcome so much in such a short time. He is a fighter, stubborn and determined. He manages school with a 1:1 support, and they find ways to include him in everything. He has an amazing sister Mia who supports him and cares for him so much, she is a truly amazing sister, and Deon adores her.

Although our lives will never be ‘normal’ we have accepted our normal. We try to provide Deon with life experiences and celebrate every milestone no matter how small, and don’t take anything for granted, make memories and make every day count. Every day we have with Deon is a blessing.

Patterns

Squares received

Card

Stitched by: Anne Berg Gjolberg