Charlie's quilt arrived today, we are absolutely overwhelmed with how great it is! Thank you all so much.
To all the stitchers, what an amazing job you made of all the dinosaurs, you have certainly made our Charlie so happy, he loves every bit of the quilt. Charlie can't believe spider man and black panther are even included in it.
To Leandra, what an amazing job you have done putting the quilt together, and such a beautiful card you made, thank you.
With lots of thanks from,
Sara and of course our wee Charlie.
Charlie is 5 years old now, but he was diagnosed prenatally with hypoplastic left heart syndrome. This means he was going to be born with only half a working heart; the left ventricle and valves on the left side of his heart didn't develop.
Charlie is from North East Scotland, but was born in London. At 3 days old he had his first major open heart surgery called the Norwood procedure. He made it home at 7 weeks old. He had to pack his bags again at 11 weeks old and head back to London for his second major open heart surgery called the Glenn procedure; this time he got home after 10 days.
He then went a bit downhill and at 8 months old he had to have an unplanned surgery to fit an extra stent in his heart. During this operation everyone discovered his airway was extremely narrow and damaged and it was very difficult to intubate him, but he recovered and got back home. He had numerous airway stretches over the coming months and caught loads of upper respiratory infections. Until when he was a little over 2 years old he finally was allowed an airway reconstruction in Glasgow.
His recovery was very traumatic, his heart didn't like the pressure of him being ventilated, it was touch and go. A few times mum and dad were told he may not make it. He woke up from an induced coma but had completely lost the muscle he had built up and was basically a newborn unable to sit and had an NG tube to eat. It took a good 6 months to get muscle tone back, and he was in and out of hospital with pneumonia during this time.
His airway reconstruction was so scary we had to wait a full year, until he was 3 years old, for his final planned open heart surgery called the Fontan procedure. He headed back to London, it was scarier for him this time as he was older and understood when he was in pain. It went to plan, his heart now had a completely different circulation and was able to run just off the right side, he managed to go back home after 5 weeks recovery.
He hasn't had any more surgeries since. His immune system is compromised so he tends to catch every bug going and he does love visiting the nurses in his local children's department. But he looks normal from the outside, he sometimes have to use a mobility chair as his energy is much lower than normal kids and he has low oxygen saturations causing him to turned blue sometimes. He take lots of medications but is very used to it now.
Hopefully his new heart circulation can keep him going lots of years before heart transplant is mentioned. He loves to tell people about his half a working heart, people are surprised how well he can live life with half a heart.