When the Chances of Survival Are Slim Or None
This is part nine of my mini-series “Welcome to Motherhood.” Miss the beginning? Start here.
“Hi Mr. and Mrs. Bennett, I’m Dr. Pearl,” he said, holding out his hand.
We shook it, then waited for him to begin.
“Your daughter proved herself to be quite a fighter. We think if she remains stable for a few more days, she’ll be strong enough to have surgery next week.”
He pulled out a notepad printed with a heart diagram and began sketching Elli’s heart.
“Wait,” I interrupted. “They told us the first day that they thought she would need a heart transplant.”
“She doesn’t have time to wait for a transplant,” Dr. Pearl answered. “The average wait time is six weeks, and we think she has about three. Her heart is pumping nearly all of her blood to her lungs, see how huge her pulmonary arteries are?” He pointed to the sketch. “Her lungs are thickening up to try to resist all that blood flow. In three weeks that thickening will be irreversible. Her body will be unable to adjust to the normal blood flow a donor heart would provide.”
“Oh.” We chewed on that for awhile as he continued.
“Also, her heart function is fairly strong. We’d like her to keep her own heart as long as possible – it’s better in the long run.”
Elli is a fighter! Her heart function is good! We held onto those shreds of good news.
He began to describe his plan for surgery. The biggest priority was to open up her aorta so it could pump oxygenated blood to her body, and to separate blood flow to the body from blood flow to the lungs.
“We will have to put in a conduit to serve as a pulmonary artery,” he explained.
“Where do you get conduit?” we asked.
“It depends on the size of the child. For infants, we usually use cadaver. As kids grow, we can use bovine.”
I tried not to shudder at the word cadaver. “Can her body reject the conduit like it could a heart transplant?”
“To a certain degree, because the body sees it as foreign. But it isn’t living tissue, so she won’t have to take anti-rejection meds.”
The trunk would become Elli’s aorta and would need a valve, since the current one was so leaky. He estimated that 80% of the blood pumped through her current valve leaked back into her heart with each heart beat.
“We will put the valve in last, and if the surgery is too long, we will wait and put the valve in another time.”
“How long do you expect this to take?” I asked.
“She will be in the O.R. at least 10 hours and on the heart-lung bypass machine for much of that time. You also need to know that during part of the surgery, we will have to stop her heart altogether.”
I froze. “What?”
“I need the surgical field and her heart free of blood at one point in the operation. We will chill her body down and keep it cold, but we only have 90 minutes to get everything done.”
We stared at him.
“You’ve heard stories where someone falls through ice into a frozen pond, gets pulled out an hour later, and survives?” he asked.
“It’s the same idea. The cold temperature protects the brain and other organs from damage from the lack of oxygen.”
I tried to swallow my panic. This was a controlled situation, I told myself. Not like what happened in the NICU.
“We won’t be able to close her chest right after surgery. Because of all the work we’re doing, and because we’re putting in that conduit, everything will be swollen for a couple of days. We will cover it with sterile drape and close her chest here in the CICU once the swelling has gone down.”
I tried to imagine what that would look like, and failed.
He pulled out surgical consent forms and recited all the risks of surgery, including more brain damage, reactions to the medications, and death.
“I can only give this surgery a 20% chance of success. But I can tell you that she has 0% chance of surviving without the surgery. You don’t need to sign right now, but you need to sign before we do the surgery. I’ll stop by again tomorrow so you can ask more questions. I know this was a lot to take in.”
I looked at the line where my name needed to go. It would be tough enough to decide this for myself. But this was another person we’re talking about. My signature would authorize someone to cut my daughter’s chest open, pack her in ice, stop her heart, and hopefully, 1 chance in 5, get her heart beating again. But not signing meant 0 chances of her seeing her first birthday.