Last week, after the MRI and before getting a call from the cardiologist, Barry and I started to make plans to relocate to Gainesville. Despite all we’ve been through, I guess we both just thought we would get news that baby G didn’t have secondary pulmonary lymphangiectasia. After all, not all HLHS with restricted or even intact atrial septum develop it. It’s exceedingly rare, even in this population, <1% according to some studies. There have been a few retrospective studies of infants born with HLHS and CPL, one of them citing a 100% mortality rate by 5 months. There is some evidence that this condition, despite aggressive treatment and medications, is often fatal in the neonatal period but if the baby survives, improves without any deterioration in respiratory status around age 6. Much of the research on this has been in kiddos who have the primary type of this disease, which happens as an isolated issue due to, they think, a dysfunctional receding of large lymphatic channels around 20 weeks of gestation.
You probably know where I’m going with this. Our son’s MRI showed evidence of this lymphangiectasia. I don’t even know why we were surprised. After everything, all the ups and all the downs, we were starting to gear ourselves up for the long haul. We were about to call in lots of favors and go live 4 hours away to be in the best place we could be for our son. But this news, like so many other times before, took the wind right out of our sails. Not only is this another (big) piece of evidence that we will likely only have G with us for a short time, it also likely makes him not a surgical candidate. The cardiologist was clear that if he were to present our case to surgeons now, they would probably feel he was too risky of a candidate. He was amenable to continuing with our original plan: wait and see how he does. Assess at birth. If he comes out fighting, defying every single odd stacked against him, we can go from there with any options we have. But, being a data/science/medical person, I just don’t see that happening. Even though we have Lauren who has fought like hell through her issues, I just can’t see through all the bad stuff. I hope with everything that I have that I am wrong. I hope he surprises us. I hope he comes out fighting and he proves to be as resilient and strong as kids are known to be. But I also want it to be known, especially to him, that it’s okay not to fight if fighting means pain. It’s okay not to fight if fighting means a life full of sickness, suffering, surgeries, unhappiness and longing for a different one.
If this journey so far has taught me anything, it’s that my own selfishness cannot replace giving my kids the best possible life. I want to be selfish. I want to do absolutely everything in my power, and the power of modern medicine to keep my baby on this Earth with me. With us. With our family. He is just as big a part of our family as either of our other children. And I know he will continue to be, despite what happens in the next week. We will fight for baby G for as long as he fights and we will follow his lead. We are not in control and we are at peace with the fact that baby boy will guide us to choosing the best path.
It is terrifying to know that in another week I will no longer feel him squirm and kick me anymore. I’m trying to savor every moment that he is inside me, safe and thriving. I will update the continuation of our journey but it may be several weeks before I am ready. Thanks for following us and send all the positive vibes you can for our family.