I can imagine how that felt. We were in a limbo like state after his surgery. His urologist was a pioneering surgeon for the ACE. Yet he gave little guidance on care and maintenance. It was trial and error and conflicting advice from other specialists. But it was relatively new and so it was literally trial and error process for most at that time.

We were fortunate to get some of the top surgeons in our region and some pioneered surgeries that are now routine for many of the life changing surgeries. Sometimes it's not fun being the guinea pig.

We could have opted out of life saving operations at birth. But I also would have never got to be a father to an amazing son who defied the odds.

He hasn't known anything different but you had life altering situations thrust upon you later in life. But it is clear that you were born with resilience and strong mental fortitude to persevere. I don't envy your journey but I wish you the best.