Phineas's Story

told by mum.


Phineas (Phin) was born with an incredibly complex heart, among his defects he had several holes, his left lung was only connected via a tiny conduit and his pulmonary artery was missing. If the sonographer hadn’t picked up on his defects at our 20 week scan there is a chance he may not have survived long after birth.

Luckily they did and he spent his first 8 weeks in Great Ormond Street where the surgeons worked their magic. In his first 7 months he had four heart procedures including two open heart surgeries. He also spent a short amount of time on life support when a clot nearly blocked one of his tiny arteries.

Phin lives a fairly normal life and other than a significant speech delay you wouldn’t know that he was any different. He goes to school with his twin sister and loves maths. He knows he has a ‘special heart’ and that means lots of check ups and appointments that his siblings don’t have but he doesn’t seem to mind.

His condition is like a cross between truncus arteriosis and pulmonary atresia but he doesn’t really tick the box of either.

If you have been affected by any of the issues raised in this content you can contact or 0300 561 0065.


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