Owen's Cardiac Plan (as of today)

My head has been spinning as I load up on research about possible cardiac outcomes for Owen.  My main goal is to give him the best quality of life possible.  The results from his most recent cardiac catherization shows his pressures to be too high to qualify for the last staged palliative surgery for his single ventricle anatomy. The biggest issue he has is his tricuspid valve stenosis and regurgitation.  Owen has already had two valve repairs and the final consensus is that it isn't going to get any better.

I spoke with Dr Stock at Owen's cardio appointment today about "options".  I hate to compare Owen to other kids dealing with HLHS, but the reality is that he is one of the "sicker" ones.  Kids with the Glenn (2nd staged palliative surgery for single vents), are not meant to live into their teens or adulthood.  The circulation is not ideal for growth and he just isn't getting enough oxygenated blood to his lungs.

When I posed the question to our team at Stanford about the age of their Glenn patients, I was told the oldest they see are in their older single digits.  If they don't qualify for the next staged surgery, they move forward with transplant. 

I get asked all the time.. Why not just move forward with Transplant?

Heart transplantation is not a cure all.  It is taking one heart defect and replacing it with another.  Heart transplant patients are always at risk for rejection, cancers and coronary artery disease.  The way I have heard it put is "it's like placing a ticking time bomb."

Owen is also at higher risk of rejection due to his high PRA levels.  His antibodies are highly sensitized and when listed for a heart, his antibodies will cause voids on his listings.  So not only will he need a blood type "B" heart, but he can't accept from 60-80% of the donor population.  That significantly decreases the number of donor hearts.

If that weren't tough enough to digest, Owen is getting to an age where finding a heart is the most difficult!  They match donor hearts to the size of the recipient.  Owen is getting too big to accept a donor heart from a small baby or toddler, but it too small to accept a donor from an adult.  There just aren't as many school aged children that have "accidents"... which is just so hard to even write. 

Each week, the cardiac team at Stanford meets to discuss individual cases.  Owen was discussed at last weeks conference with a group of 40 cardios and surgeons, including Dr Hanley (Owen's surgeon).  They unanimously agreed that Owen will most likely never become a Fontan candidate.  Even if he were to find a way to "squeak" by with a successful Fontan, which they don't foresee, the post Fontan quality of life would be difficult and short lived. 

With that said, they are moving forward with discussing him at Transplant conference in the next two weeks.  Their concern is that Owen is maxed out on heart failure treatments at this time.  There is no additional medications or oxygen therapy that can be used that he is not already on.  When, not if, he starts to decline, it will be quick and time will be limited.  That was no surprise to hear, but considering the information I just listed above, we don't want to waste valuable time. 

The main topic of discussion is going to the right time to list him for a heart.  They need to discuss frequency and timing of IVIG treatments to help get his antibody levels down.  They need to discuss the option of letting us wait for a heart in Phoenix with medical transportation available to get us to Stanford immediately if a heart does become available.  They need to discuss when they want to see Owen next for followup.

On the upside.. Owen continues to do better than ever!!  I really hope we can get another year or two out of his existing heart, but don't want to run out of time and options.  Do we get a second opinion from Boston Children's or CHOP regarding his Tricuspid Valve?  Do we discuss PRA's and transplant with other centers?  I have full trust in Stanford, but when discussing life or death options about my son, I really do want a "You have exhausted all options" from another top cardiac center as well.   A simple.. "we agree with the path you are taking.."

We are so grateful for the three additional years we have had with Owen's existing heart.  When I look back to early 2009, we were pursuing transplant at UCLA and Owen was already undergoing antibody treatments.  If it weren't fro the 2nd opinion obtained from Stanford, he wouldn't have had these three extra years with his heart.  I won't give up the fight to get all the information I can to make the right decision for Owen. 

All your prayers and "good vibes" over the next couple months are appreciated. Big decisions will be made from both our team at Stanford, obtaining a second opinion and that we will find the best treatment for Owen moving forward. 

Thanks for all your love and support over the last four years!! It has been such an amazing journey and we are so blessed.