Fifty Shades of Doctors

We've seen many doctors in the last few weeks - including a full day at Seattle Children's Hospital where we were given a fresh perspective and second opinion on the situation.

Welcome to Wimbledon, we are the tennis balls. 

Back and forth, up and down, every doctor gave us an emotional whack breaking our trajectory and sending us flying back over the net. I think we are finally broken in - or becoming numb to the situation. Either way we've learned a lot... and mostly that doctors vary widely in their approaches, prognoses, spin and candor. 

Overall, we're feeling a lot more hopeful about the situation. The prayers, good karma vibes, wishes and generously donated meals have been working wonders. Baby grew and within the last four weeks, the tumor did not.  My regular perinatologist is hopeful baby will go full term and if he does come early the regular pediatric cardiologist says they will of course operate no matter how small he is but they should be able to sustain him long enough to let him grow stronger especially if the tumor continues to not grow. For that matter, as the tumor is positioned right now, they think they will at least be able to wait a day or maybe even more after birth before we go to Seattle Children's for the surgery so we should all be able to stay together. 

Just because we like to shake it up a bit we got a remarkably different diagnosis and prognosis from the second opinion team at Seattle Children's. They found what they think is a second tumor in his heart which indicates what we had long ago ruled out: an 80-90% chance this is a chromosomal disease called tuberous sclerosis. This disease can by asymptomatic but most likely (+80%) includes significant issues including seizures because of brain tumors, kidney problems because of tumors, skin lesions and mild to severe mental retardation. The genetic doctor described mild mental retardation as still being able to dress himself as an adult and maybe hold a job at a Pizza Hut; I think I was supposed to take comfort in that statement. I decided if he does have that disease I look forward to proving them wrong. 

The following week we met with our regular pediatric cardiologist who is much older and arguably more experienced. She does not believe he has a second tumor and does not think this is a tuberous sclerosis case. Her diagnosis and prognosis has not changed even in light of Seattle Children's opinion.

We obviously really don't want tuberous sclerosis, and actually struggle with that diagnosis a bit because it's the textbook diagnosis. The most likely scenario (+60%) explaining fetal cardiac tumors is tuberous sclerosis. So we wonder if this doctor who is much younger but obviously extremely intelligent is just banking on research, statistics and probabilities whereas our regular doctor has 30+ years of actually seeing tuberous sclerosis cases and anomalous cardiac tumors. We're kind of hoping they'll just continue to work together and hopefully come to an agreement as they watch the progress of our little one. On the plus side, if the tumor (tumors?) is a rhabdomyoma (the type of tumors associated with TS), it should recess after birth so we may not need surgery at all. Because of this both doctors agree that after he is born (so long as the tumor hasn't changed) we won't put him into immediate surgery but will watch him closely with echograms, MRI's, and additional monitoring to see if the tumor shows signs of quickly recessing and if he has any tumors in his brain as well. 

There is so much to comprehend, and so many decisions to make but one thing we realized this last week was how little we really could do or decide now. Our baby's fate is truly in the hands of God and as our doctor wisely said - "If he passes in utero or on the operating table know that it was probably for the best, because we (the entire doctor team) are doing everything they can and he is going to have the very best care possible." So I'm trying to give our burden of weight and worry to the Lord and rely on prayers and the outpouring of love and comfort from our friends and family. This coming Sunday our entire church congregation will be fasting and praying for our little boy. If you believe in those powers or even just want to believe, we invite you to fast and pray along with us... There is a strength in numbers and a power in prayer and the two combined can and will make miracles happen.