DIANE: I think those hit you so much harder than it hit me because you had never seen -- the ultrasound does make the baby seem pretty real. Plus, I was feeling all this movement and Dads can't feel that. It is different. To me this baby already was a person that I knew and to me seemed very, very alive. I remember he was much more active than my first son had been.
They explained to us that these babies are perfectly okay in utero because Mom's body circulates the blood for them, and that's why he was so active. But it struck me as just impossible to believe that this incredibly active baby could be really so sick, and would be so sick. At 32 weeks of the pregnancy, they did another echocardiogram and said the baby also has coarctation of the aorta, which means that his aorta was closed. We said, "What does that do to his chances?" and they said, "It makes his chances much slimmer of surviving his first surgery."
And, they said if you think of heart disease on a spectrum for congenital heart defects, hypoplastic left heart syndrome is on the most severe end of the spectrum. If you look at hypoplastic left heart syndrome, he's on the most severe end of the spectrum for his disease. At 32 weeks we came home really believing that there's no way, no way he would live, which is so impossible to believe looking at him now. He certainly had the odds very much stacked against him from the beginning.
BILL: I was mired deep in denial about the whole thing.
DIANE: Which was effective, actually. I think denial can be an effective tool.
INTERVIEWER: It's very useful.
DIANE: There were times when I wished I was able to be in denial about it and couldn't be. Yes, you may have a cookie.
. . .
DIANE: Now they tell us he's on the best end of the spectrum. It's pretty miraculous, definitely miraculous. If they could figure out why my son has done so well, you could make all of them turn out that well. They just don't know. They've talked about that there's probably lots and lots of cofactors.
The cardiologist kept saying he's got to have very strong genes in every other way, so I guess we did something right. He gets sick a lot, but he seems to bounce back from everything. I don't think they really know what the other cofactors are. His size was in his favor certainly, because he was 8 pounds, 2 ounces, and I think that helped. If they start out at 6 pounds, and then they go through heart surgery and they lose a lot of weight, I know after his first surgery he had to be down to 6 pounds. I didn't ask his weight. I know he came home at under 7 pounds, and he was pretty tiny.
BILL: He was born looking pink and perfect and absolutely fine. The delivery itself was quite an experience. I counted 13 people in the delivery room and he was baptized immediately. There was a priest in the delivery room. They hustled him out of there pretty quick at Brigham and Women's, and then upstairs and across the bridge to Children's Hospital. Almost literally ran him in the cart across the bridge to Children's Hospital.
DIANE: The second night they made a decision late at night. We were really pushing to please do the surgery before he starts to get into trouble, so we were really advocating for that. Around 10 o'clock that night, they called us in my room and said, "Yes, we'll do the surgery that morning." We went in that morning and he was clearly failing. They were bagging him, which means they have the oxygen mask, manually giving him oxygen, breathing for him. And we said, "What does this mean?" And they said, "We need to get him into the OR now or we'll lose him."
He was in ICU, the cardiac ICU. He was in good hands, but it was obvious. They said if they had not made a decision to do surgery that morning, they would have needed to make an emergency decision for surgery. So it was good that they had that plan in place.
They took him up at about seven in the morning, six-thirty or seven in the morning. I think his first surgery was six hours. We were able to call for updates every half an hour, and they were giving us updates as they went. About half way into it they said they put him on bypass, they cooled the heart completely, stopped the heart, do what they need to do and then they say they're warming them back up, which means they're getting the heart to beat again.
About half way through it we called for an update and they said they did the repair, they're warming him back up. We called half an hour later and they said he's back on bypass. I think at that point I really believed he wasn't going to make it out of the OR. They told us later that that was a very critical moment because to get them off bypass twice is extremely difficult. They said two years prior to that, they never would have risked it, but they knew looking at things when they warmed him back up, they knew he wasn't going to survive if they didn't at least make the attempt. I think at that point we didn't know much, but we knew enough to know being put on bypass twice wasn't so good.
BILL: The doctor told us later on that after he had done the repair, started the heart, saw the repair leaking, as the way he described it to me, and realized that my son wouldn't survive again stop the heart, which is a life threatening thing anyway. Most people in one single procedure won't go on bypass twice. He said he tried something with plumbing in the repair that he had never tried before. He even referred to it as a "shot in the dark." It worked. It worked like a charm, as far as the way he hooked the heart up.
I remember him saying, "It's a good thing you brought him in here because I really learned something by doing the repair this way. I tried something I had never tried before and it worked." I'm sure he wouldn't have said that immediately after the surgery, but since Jake was out of the woods, I remember him saying that to us, that Jake taught him something.
DIANE: I do remember him saying that, that he would do it differently next time.
BILL: Yes, like down the road in the future he would do the procedure differently because of what he discovered by working on Jake's heart. It was pretty amazing.