Lincoln's Story

Told by his mother Tanya 

My youngest son has a complex Congenital Heart Defect (CHD) and Heterotaxy Syndrome RAI meaning he has misplaced organs and no spleen, basically he has a complex anatomy. We found out at the anatomy scan that there was something wrong with his heart.

He had his first surgery at 4 days old. A Modified BT Shunt. He had the Glenn at 11 months old and he will be having the Fontan in the coming months. Lincoln will be having his third and final open-heart surgery soon. His surgeries are not to extend his life but to give him a better quality of life.

We wasn’t sure if he was even going to get the first lifesaving surgery until he was 3 days old because of how complex his anatomy is.

He is practically 4 and a half years old. Every day he amazes me. He’s such a fighter, a true Heart Warrior I’m so proud of him and how his 3 older brothers are with him.

I was a parent to 3 previous boys, and we were unaware of it until it happened to us. In Lincoln’s case it is not genetic was just a case of bad luck. But we don’t think of it like that because Lincoln is the sweetest, kindest caring boy with amazing manners, not only that but he is independent and pushes himself, but he also knows his limits most of the time. He can’t walk far but he will certainly keep trying, for example going upstairs he will try sometimes with regular breaks but if he knows he can’t, he will shout me, his dad, or brothers to carry him up. He knows he needs to save that energy so he can have a little play with his brothers even though he can’t keep up with them.

There needs to be more awareness about Congenital Heart Defects.

We love our 4 boys so much I’m so proud of each one of them.


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