Our first little boy has a heart condition, a condition that now he's had his operation isn't life threatening and he is doing great. Because of this when we got pregnant with Sonny. We had to have a fetal echo during pregnancy. This scan was at 20 weeks and at this time Sonny was diagnosed with Aortic Stenosis (the same as his big brother). We were absolutely gutted - but we knew the condition and we knew the amazing surgeons at Southampton General Hospital. It was kind of an 'easy fix'. 

8 weeks went by and it was time for the second check on our baby boys heart. 28 weeks pregnant. It was during this scan that we realised things had taken a drastic turn and our baby boy was very poorly. We were taken into a side room and told that Sonny had Hypoplastic Left Heart Syndrome. This is when the left side of your heart does not form. He has half a working heart. We were told the horrifying statistics and offered a termination. 

We declined the termination and wanted to give our boy a chance. This involved a series of open heart surgeries. The first at 1 week old (Norwood), second around 5 months old (The Glenn) and third around 4-6 years of age (Fontan). 

We were told all the things that come along with this condition - facts that haunt us daily. Short life expectancy - late 20s. Life limiting - low saturation levels meaning low energy a lot of the time. 

Sonny was born at 39 weeks, he came into the world screaming and at a great weight for a cardiac baby. He had his Norwood at 8 days old which came with lots of complications, a stint on ECMO (life support), failed extubations, blood clots and collapsed lungs. 

He sailed through his second open heart surgery at 5 months old and is now thriving and living his life to the full. He is the funniest, cheekiest little boy and we love him so much. We are so proud to call him our boy. 

We are supporting the charity Little Hearts Matter as they work closely with single ventricle children. The support they have shown us through Sonny's journey has been incredible. We have met lots of other families and children with the same condition as Sonny through this charity.

We need to raise money to help further the research into single ventricle conditions. Sonny is on a palliative care plan - we need to change this. There needs to be something that we can offer these incredible children.