Knowledge is Power

Yesterday marked a very profound day for our families as it was the three year anniversary of Olivia's pre-natal diagnosis.  We celebrate the day each year knowing that the advanced knowledge of her special little heart allowed for a whole world of possibilities and forward thinking that have made her journey.  It also gave a lot of us the time to research and understand the potential for her future.  Namely for me, what complications could arise and how and what we would do to deal with them.  I knew and tried to educate everyone around me that the likelihood of Olivia needing a heart transplant someday was high.  Hopefully she could into her early 20's, but it was a very real possibility that it could come sooner.

Today I was reading the local Chicago paper and a high school noted that they lost their second teenage athlete to an un-diagnosed heart defect.  Knowledge is power, having the time to treat a defect is critical in the success rates of CHDs.  There is still no scientific reason why Olivia's right ventricle became so enlarged since her Fontan that it rendered her heart useless for the long run, but the team is still looking for clues and a possible reason.  It's too late to help Liv's heart shrink in size or regain function, but if it could help any of her heart buddies, I'd be thrilled.

As for Liv's current two chamber heart, many of you already know that she was officially listed as status 1A for a new heart as of last night.  I've heard from many heart moms, a lot of them urging us to take Olivia's case to CHOP or Boston for a third and fourth opinion to see if there was anything other than this that could be done.  There have been many specialists involved to arrive at this conclusion that the new heart was the way to go and other hospitals weighed in as well.  Ultimately though, we felt that even if a reason for the RV failure was found and could be tweaked, it would only be prolonging the inevitable.  I don't want to put Olivia through a fourth surgery that wouldn't restore her full function to what it was pre-Fontan to ultimately disrupt her life in a couple of more years with a fifth surgery being a transplant.  She'd be school age by then and with the decreased function quality of life would continue to take a slow demise.

This is the right decision for Olivia and our families and I understand that it isn't for everyone.  But when I read about those perfectly healthy athletes passing away unexpectedly, I am convinced more than ever that I want Olivia's life to be lived to the fullest and allow her as much normalcy as absolutely possible because we just never know how much time we have left.