When Dr. Woods and the team at Mary Bridge diagnosed Tiernan, he told us that even though he's seen all of these defects before he had never seen or even heard about them all in one heart. This meant he didn't have a whole host of cases to guide him in planning the surgical path for Tiernan. He knew he could possibly follow a few different paths but wasn't able to point to other kids who had gone before us and what their lives were like.
I'll tell you this much. When your child is facing one or more open heart surgeries in their lifetime, it doesn't matter how many others have the same defects, except when it comes to the need to see others who have survived and even thrived. It is always scary. But doctors all now know basically what to do for a true HLHS or Tetralogy of Falot or Transposition. They don't always know what to do with a "Coarctation of the Aorta/Complete Unbalanced Right Dominant Atrioventricular Canal/Mildly Hypoplastic Left Ventrical/Big Ugly Floppy Common AV Valve Regurgitation."
There just isn't research to say difinitively what path a surgeon should take.
So they guess.
And things go wrong.
And this forces their hand to treat him like a single Ventrical, even though he isn't truly a single vent kid.
And then you think your path is set.
And you wait.
And when people ask what defect he has there is no all encompassing phrase to describe what he has so you just say he's closest to HLHS.
And you wish you had some people to really look to who have the SAME heart.
So when I found my way to some FB group thread and there was a new mom on there describing her son's heart and I felt like I was reading Tiernan's diagnosis, I might have cried a little.
Because that had truly never happened.
Walker is Tiernan's little Heart Twin. Yes there are a few differences but the similarities are astonishing.
And not only the defects.
The surgeries they have had and the complications and recoveries following have been incredibly similar. They both had feeding tubes and issues surrounding all of that.
They both were set on that single vent trajectory because doctors just didn't think their LVs were adequate to handle the job.
And then Hanley looked at Tiernan's heart and disagreed.
And Ashley thought why not ask? And Dr. DelNido looked at Walker's heart and disagreed.
And last year within a few weeks of each other, Walker and Tiernan headed down the bivent path!
Walker was still young enough to do it in a 2 stage approach where they "recruit" the LV to encourage growth. I really don't know a lot about that one because Tiernan didn't have it.
But yesterday Walker returned to Boston to have a cath to see how things went.
His LV is now "of normal size"!
Incredible!!!
So tomorrow he will go in for his 4th open heart surgery in his short life and DelNido will perform the same repair Hanley did successfully for Tiernan almost exactly 2 years ago.
Please keep Walker in your prayers and thoughts tomorrow.
I'm so hopeful that DelNido will be able to take down his DKS and Glenn with only native tissue and no conduit, just as Hanley did for Tiernan.
I pray DelNido and the CVICU team will not push for a quick wean from diuretics so Walker's heart can adjust to its new jobs, just as Tiernan's has.
I pray that the similarities between their hearts will mean continued similarities with the success of this repair.
Because these two boys need to meet.
