I used to go to the doctor and just accept whatever he (or she) said. Particularly if the doctor was a specialist. Who was I to question this person with advanced degrees? Who was I to question the tests he proposed, the results, his diagnosis, or even the color of his pants? If you were in a white coat, I was going to accept anything you had to say as the absolute truth.
Thankfully, on October 15, 2004, when the perinatologist handed down Corey’s grim diagnosis, I didn’t choose blind acceptance of the man in the white coat. Instead, we chose to get a second opinion.
Continuing down Corey’s CHD timeline, the next important date is October 20, 2004. Between October 15th and that date, it was an agonizingly long wait in a fog of fear and sadness. We had all but given up hope that our child would survive. At one point I even hoped the amnio would cause a miscarriage so that I wouldn’t be forced to make the impossible decision between termination and compassionate care. There’s never been a lower point in my life.
Finally, we went to see a pediatric cardiologist (PC) at The University of Maryland in Baltimore on October 20th. I had another fetal echocardiogram. It felt almost pointless. We expected confirmation of the perinatologist’s diagnosis. We were just going through the motions. I remember lying on the table, flat on my back, thinking, “Women as pregnant as I am shouldn’t be flat on their backs.” But my next thought was, “I guess it doesn’t matter.” Still, we needed to be certain we’d done all we could before we made our impossible choice.
That’s why we were shocked and confused when the PC told us a completely different tale than the perinatologist. He said that our son had tricuspid atresia, and while it is a major congenital heart defect, there was every reason to hope. He said it would be a difficult road, but there was another option. A three-stage reconstructive surgical pathway. When we objected and told him what the perinatologist had said, he replied, “Well that guy’s an idiot.”
We were more confused than ever. Did we dare to have hope? We had two completely opposite opinions. From two specialists. How could they differ so much? What were we supposed to do now?
We sought a third opinion. A tie breaker. On October 25, 2004, we went to Johns Hopkins, had yet another fetal echo, and consulted with another group of PCs. The PCs all concurred. We had a chance. Our son had a chance at life.
We met with the surgeon, and he explained the details of the surgical pathway. When we were nearly finished with the appointment, and our heads were swimming with all the information we’d been given, I asked the surgeon point blank, “If this was your child, would you bring him into the world?” He said, “Yes.” That cinched it for me. We were going to get in the fight and give Corey a chance.
I will never, ever, undervalue the importance of a second opinion again.