The Day of Diagnosis

BILL: The whole thing with Diane's pregnancy, a couple of things stick in my mind is finding out we were pregnant for sure, and Diane coming to visit me in my office. I came around the corner, and I could tell by the look on her face we were pregnant. We were trying. We wanted a second child and that was real exciting. Those were great times. We went to Florida. We came back and we really thought nothing was wrong with the pregnancy.

BILL: The day of the diagnosis was like movie. It was raining, I mean pouring rain. We probably got two inches of rain that day. It was almost like slow motion going through the driving from Newburyport down to Boston to get the diagnosis. It did knock us for a loop.
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DIANE: This second pregnancy was going to be our -- Matthew's (first son) early days were really stressful, your first baby. So we said this one's going to be normal, easy and it was like being kicked.

It is sort of an out of body feeling like it's not real: surreal. I remember even at the time thinking this doesn't seem real. This just does not seem like the kind of thing that happens to people like us. It happens to other people.

For me, not even having an understanding of what a healthy heart should be or should look like, I was really at a loss to comprehend this very complex disease that they were trying to explain. Give us a crash course in two hours.

BILL: The other thing about that day is at the end of that day after we had the diagnosis, we stopped and had some dinner. I think both of us were pretty convinced that there was no hope at that time. The doctor who actually did the final diagnosis was very discouraging about the disease and told us, advised us actually, to terminate the pregnancy. That wasn't something we were prepared to do.

It was almost a fluke that the doctor, our cardiologist, was in the office and took us across the street to Boston's Children's Hospital. It was strange. But at the end, halfway, three-quarters even after that day, we had very little hope for Jake.

DIANE: I was five and a half months, 24 weeks. Does that sound about right? A little beyond half way. Maybe a little more -- 26 weeks. I know it would have been illegal at that point to terminate in Massachusetts. We would have had to go to Wichita, Kansas, so we were far enough along that it wasn't able to be terminated here and that's why the radiologist said, "Hurry and make your decision because you can still go to Wichita."

BILL: She actually handed us a pamphlet with directions on how to get to this abortion clinic in Wichita, Kansas and advised us that our insurance company may actually pay for that procedure and that flight and what not.

DIANE: I don't remember that.

BILL: I remember that. That whole day, we had gone to Newburyport and we had been sitting, or I had been sitting while they were doing an echo on the baby. We had seen little hands, little feet, the head, and then they said there was a problem with the heart. But we had become attached to this little head, the hands and everything. We got down to Boston. We see more hands, we see the head, we see the feet. It's terrific. They bring us to a smaller office and they said the baby has very little chance.

I remember we asked if it was a boy or a girl and they told us it was a boy. At that point, having seen the little hands, and feet, and knowing it was a boy, not that that makes any difference, all of a sudden it became a person. We knew we had to go forward with some kind of repair as opposed to termination.