Should we have separated conjoined twins, knowing one would die?

Doctors work hard to save lives. But what if saving one life might mean ending another?

Several colleagues and I at the MassGeneral Hospital for Children recently faced that chilling and ethically daunting question. It started with a phone call on a Friday afternoon before a long weekend. As chair of our pediatric ethics committee, I’m used to calls from colleagues posing questions. But this one was different. As we described in The New England Journal of Medicine, our hospital was being asked to evaluate 22-month-old conjoined twins to see if we could separate them.

My mind immediately turned to cases typically portrayed in the media. A massive team assembles and, after extensive planning and preparation, performs a grueling day or two of separation surgery. The children have some postoperative challenges but eventually leave the hospital healthy, a testament to modern surgical skill and medical expertise.

But I wouldn’t have gotten a call if that was the story.

As our specialists described in intricate detail the vast connections between these twin sisters — they were joined from the xiphoid process at the lower end of the breastbone to the bottom of the pelvis — reality sunk in. Twin A (I’m not using their names to protect the family’s privacy) had complex and severe heart disease and her lungs had limited ability to deliver oxygen throughout her body. While the skin on her upper body had a bluish tinge, signaling it wasn’t getting enough oxygen, her feet were pink, meaning that her sister’s heart and circulation were helping keep her alive.

Over the next few weeks, the medical situation became clear — and worrisome. There were no options to fix or ease Twin A’s heart. She had ongoing lung infections, a sure sign that her health was declining, and her oxygen levels continued to dip dangerously low. If we didn’t do something, Twin A would die and take Twin B with her.

Our medical and surgical teams met dozens of times to determine next steps. We talked through whether separation was technically possible. Were there enough organs to “make” two people from one? What would happen afterward? The evaluation, led by Dr. Allan Goldstein, our surgeon-in-chief, concluded that separation was physically possible but Twin A would not survive afterwards.

Even though we could do the separation, should we do it?

Our pediatric ethics committee reviewed numerous arguments and readings, including former U.S. Surgeon General C. Everett Koop’s 1977 case of conjoined twins with a shared heart. Our daily mission as physicians is to do no harm, ensure a child’s best interests, and honor a parent’s rights to make decisions for that child. How we could accomplish all three was something we dispassionately debated for endless hours over multiple weeks. Did we have a duty to act, or should we allow nature to take its course? Who decides what to do?

We discussed whether the girls were one unique person or two individuals. To reframe the situation, we used analogies like the mountain climber hanging by a rope, threatening his tethered climbing partner’s life, with Twin A being the dangling climber, threatening her healthy sibling. Twin A could be considered as attacking Twin B, giving Twin B the right to defend herself and be separated. We tried to imagine what each twin would want if they could speak for themselves in the impossible future.

The ethics committee ultimately concluded that a decision to proceed with surgery was ethically supported and preferable to not performing the surgery. Given the emotional weight of the decision and the conflicting views, though, we believed that the operation should not be required. This meant it came down to the family’s wishes and the surgical team’s willingness.

Religious and spiritual leaders had been helping guide the twins’ parents in their decision, while we worked to get a pulse of the hospital. Most meetings in which I presented the various ethical arguments began with everyone a little tense. Eventually, though, the staff members involved saw the tragedy in front of us — and the difficult choice. Some wanted to allow Twin A to die naturally, then whisk Twin B into emergency surgery for the separation. But it became clear that mobilizing a large surgical and operating room team on a moment’s notice was extremely unlikely, and would minimize Twin B’s survival chances.

We sat down with the family to explain the situation. We worried about their reaction. Would they think the impossible was possible? The parents, although devastated, understood the dilemma. They wanted our help. They also understood the precarious health of Twin A and wanted a chance for her sister to live a longer, healthier life. With that, we mobilized. A few staff members decided they didn’t want to participate in the procedure, but the majority were willing to help. If any hope could be found in this situation, our staff wanted to do all that it could to preserve and amplify it.

On the evening before surgery, the twins played together, like every other day they had spent living fixed in front of each other. In the morning, the parents had a private goodbye with their daughters. I cannot imagine what a parent would do or say knowing one child would not return.

The surgical team huddled before the operation, shared a multidenominational prayer, and then began its work. I waited in the pediatric intensive care unit for the operation to end and reflected on the emotional struggles of the case. Would neither twin survive, which would be devastating? Would I welcome the arrival of one child, knowing what it had cost?

I struggled with the various outcomes as a nurse shuttled between the operating room and the intensive care unit with updates. Everything was going well, she reported. Twin A was surprisingly stable. As we approached the afternoon, I began to believe that Twin A might survive. But that hope was short-lived — when the large artery connecting the twins was divided, Twin A passed away, as her sister’s circulation no longer supplied her with oxygen. Sadly, the outcome was the one we had predicted.

A few hours later, Twin B arrived in the intensive care unit. I felt a profound mixture of relief and sadness, suddenly feeling the burden of facilitating this emotional process. Even though it had become clear what we needed to do, it had been harder than I thought. I had only a few moments to say my own goodbye to Twin A and I could not hold back my tears. I wasn’t alone. As Goldstein told a reporter, “I left the operating room and cried. I cry thinking about it now. It was not easy. But I don’t regret it and I don’t think anybody on the team regretted it because there’s this beautiful girl and her parents are thrilled.”

Twin B doing well was a testament to why we did this. Within days, she was transferred to intensive rehabilitation at Shriners Hospital for Children.

A few months later, Twin B returned to our hospital with her parents. She was smiling, giggling, and playing with the people who worked so hard to give her a chance. She’s crawling now, and may even walk in the future. I asked her parents if they had any regrets. Absolutely not, they said. They felt like they had been in the best hands for the worst situation.

Then Mom shared one more piece of good news: She’s pregnant.

Brian M. Cummings, M.D., is chair of the pediatric ethics committee at the MassGeneral Hospital for Children and assistant professor of pediatrics at Harvard Medical School.