An excerpt from Nick’s New Heart: 30 Years and Counting.

In January of 1991, at twenty-two months old, Nick had another heart catheterization. Andy and I had started thinking about the next stage of surgery to finish the heart repair. Just before Nick was discharged, I discussed it briefly with Dr. Kanter.

“Tell me when you would like to do the surgery,” he said.

“Never, if it’s up to me.”

We were in no hurry for Nick to go into the OR again. The older Nick grew, the more difficult it became to agree to procedures. At least this operation would be one of the planned surgeries. By now, heart surgeons were doing an additional repair, completing the surgery in two stages instead of one. The positive side was that at least we would be taking a step forward.

Andy and I wanted the surgery date to be sooner rather than later, but we still had questions. I asked Dr. Kanter to call me. He and I discussed the pros and cons of the repair.

There was a pause in the conversation, and then Dr. Kanter asked, “Susan, are you sitting down?”

“No, but I can be.” I moved to the kitchen table and sat on a chair. Nick reached his hands up to be held from where he crawled on the floor. I situated him in my lap. “I’m sitting now.”

Dr. Kanter calmly asked, “How do you feel about a heart transplant?”

“I think they’re nice things if you need one,” I told him after a full minute. I said the first words that popped into my head. I was being flippant to cover my surprise. He was serious, I knew. We never thought that Nick might be considered for a heart transplant so young, maybe later in his life, but not then.

“I think we need to consider it.”

After hanging up with Dr. Kanter I immediately called Andy and asked him to come home early. I told him only that it was in regard to Nick, not what Dr. Kanter had asked. Andy was as surprised as I was at this turn of events. We decided that we would hear the doctors out and try not to close our minds to the idea. It did snow that night, so I phoned Dr. Kanter’s office the next afternoon and made plans to meet him two days later.

“Nick will need to have an antibodies test. So come early enough to go to the lab,” Dr. Kanter said. “If he has a high amount of antibodies, it will be hard to find a match.”

Dr. Kanter met Andy and me in the lobby of the hospital and led us upstairs to a conference room in the Cardiology Department. Nick’s cardiologist and Dr. Kanter sat on one side of the table, with Andy, Nick and me on the other. The four of us spent two hours discussing what needed to be done. The big question remained: was the next staged surgery the way to go or was it time to transplant? While talking with Dr. Kanter, I could see that he wanted to touch Nick. Andy even made a comment about it later. I am sure it was hard on Dr. Kanter also because he had become a friend. The meeting was tense, not among the people, but because of the subject.

The same sick feeling hit me as it did every time we had ever discussed Nick’s having surgery. I wanted to hide in a closet, in a corner, curl into a ball and pretend it would all go away. The discussion moved around me. I stepped back from it to a peaceful, non-painful area in my mind. Slumping in my chair, I wanted to slip away. The situation was becoming more than I could handle. We did not want to hear what the doctors were telling us. Andy said that meeting was when the cold grip of reality slapped him “upside the head.”

At the end of the meeting, Dr. Kanter said, “I’ll call you in the morning with the results of the antibodies test.” The test would be the final say. It seemed as if we waited a lifetime to get the results. We wanted answers then.

Our impression was that the cardiologist believed Nick should be transplanted and Dr. Kanter wanted to do the next stage of the surgeries. Neither doctor told us what he thought we should do. I kept asking. The doctors kept telling us it was our decision and gave us only the facts, both pro and con, that we needed to know in order to make an informed decision. The main concern was that Nick might not survive another repair, and if he did, his heart might not be strong enough to withstand the final repair needed. The long-term prognosis was “iffy” with the final surgeries. We knew that many of the hospital staff considered the Norwood procedure and the additional surgeries to be hard on the patient and their family. The staff saw how well the children who received transplants did and talked about the remarkable difference in the children’s health, seemingly making them healthy almost overnight. The nurses were positive about transplants; Dr. Kanter was having great success with them.

Dr. Kanter phoned at noon the next day.

“Why haven’t you called sooner?” I demanded. Andy and I had been nervously waiting for his call.

“I’ve been busy. What did you decide?” he asked.

“We think we should go with the next stage of surgery. What did the test show?”

“It showed that he has no antibodies.”

I was shocked. We were so confident that Nick’s antibodies would be too high that we did not really think seriously about a transplant; plus, we were afraid to get our hopes up.

I asked again, “What do you think we should do?”

“I think we should transplant,” Dr. Kanter said.

Susan May is a writer and author of Nick’s New Heart: 30 Years and Counting.

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