Though we increasingly push the boundaries with ECMO, it’s not designed for long-term use. That’s why doctors talk about the machine as a bridge rather than a destination. It is either a bridge to lung recovery or to transplant if recovery is impossible. This very fact is remarkable.
Patients like Ms. Henry, who would have died without the hope of transplant, are given a second chance at life. But it is a strange second chance, lived under the shadow of an almost intolerable reality: If transplant or recovery is not possible, then the machine becomes what we refer to as a “bridge to nowhere” and has to stop. Doctors make this clear when patients or, more often, their family consent to start ECMO. But can anyone truly understand that unthinkable possibility in the heat of the moment, when they or their loved one cannot breathe and would grasp at any chance at life, as was the case for Ms. Henry? And even if they could, what could they possibly do with that information?
Once the sedating medications were stopped, and she woke up on ECMO in June, Ms. Henry was determined to do whatever was necessary for her make it to a transplant, and to continue to find moments of happiness while waiting. Though her voice was gone, silenced by the trach tube, her smile was still there. It was what endeared her to even the most hardened nurses, who told her they loved her at the end of their shifts. When she turned 34, the nursing staff took her up to the hospital roof, lung bypass machine and all, so that she could feel the sun on her face. She listened to music. Her boyfriend and her parents visited. They all believed that the new lungs would come and that the suffering would be worth it in the end.
But the lung bypass machine can be deceptive. Patients can appear relatively stable, but they are on a razor’s edge. This was the case with Ms. Henry and as the summer wore on, complications started to cascade. By August, she bled, fluid accumulated around her heart, and she was in pain. She was taken off the transplant list, then put back on and finally, when it became clear that even if she survived the operation, she was unlikely to ever leave the hospital, the transplant team made the gut-wrenching decision to take her off the list permanently.
When Ms. Henry learned this news, she let herself sit in the sadness of it for about an hour. And then she did her best to move forward. At first there were hopes that, however unlikely, another transplant program might feel differently about her chances and would take her on. For a brief interlude, a program in Florida seemed possible. Her boyfriend readied the car to head south, Ms. Henry searched online to help her mother find apartments, while her mother prepared to tap into her retirement to pay for the air ambulance that insurance would not cover.
Then this option fell through. And even though her doctors made call after call throughout the country, trying to find another program — and each day she walked, determined to be as ready as she could if someone said yes — one by one, transplant programs throughout the country said no.
“We called every center we knew. She was a young lady and we all wanted to give her a chance,” Dr. Nirmal Sharma, the medical head of lung transplant at Brigham, told me. “But as she became even sicker, the writing was on the wall.”