Since his ultrasound our little guy has been busy with appointments. He still appears to be growing at a steady pace with a heart rate in the 140s. Most of the amnio results are back and normal so far. His first ECHO was more disappointing. The condition was confirmed but we found out he also has a restricted atrial septum/intact atrial septum which is a problem with this condition even in utero as the blood cannot be shunted from the broken left side to the functioning right causing back up into the pulmonary veins and risk for lung underdevelopment. Babies with this combination have shock and cyanosis immediately at birth and require urgent cardiac cath or surgery to create an atrial septal defect to improve their oxygenation. The mortality is high.
We have been provided with some unbearable choices, but one very hopeful opportunity. A pediatric cardiologist at Boston Children's, Dr. Wayne Tworetzky has done (at last count) 143 fetal cardiac interventions directed at several conditions, one of which is hypoplastic left heart with intact atrial septum--in this procedure his team places a stent through the baby's atrium with the goal of shunting the blood to the right, hopefully allowing better lung development and a better change of stability at birth. He published his first 7 cases of this particular intervention (before they used actual stents) in 2004 and the results were not good, however there have been great strides and he thinks now this could decrease our little guy's risk of requiring an immediate surgical septoplasty of 50% or so - a MUCH better statistic than we have heard so far. He reviewed his ECHO and feels he would be a good "candidate" for the procedure, which is not without risk, but is the first proactive and tolerable choice we have been given. So- with hope, fear, faith, love and a map of the subway system we are going to Boston on November 15th.
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