Misgivings

Our daughter Annie was diagnosed with Trisomy 13 before she was born. Most infants born with the condition die shortly after birth, but some live for many years. We exhaustively researched medical publications and parents' stories about children with this condition. After much contemplation, we decided to carry to term, and to consider medical treatment to prolong Annie's life. This was a decision that we would likely not have comprehended before our journey began.

We knew that our decision was not a common one and that the doctors might not understand or agree with it. For this reason, we met with doctors from the cardiology, genetics, and bioethics departments at the children's hospital before Annie's birth to inquire if she would be eligible for surgery if it was necessary. We were assured that surgery would not be denied based on a genetic diagnosis alone. The policy that outlined the determination of levels of treatment and the process for resolving ethical dilemmas between families and doctors was described in detail to us. Later, after we'd obtained the hospital's records, we read what the bioethicist had written about us at that meeting: "Calm, articulate, logical, framed in best interest logic. Want to give baby every opportunity for quality of life . . . don't want life of suffering."

Remarkably, Annie was born full term with a good weight, excellent Apgar scores, and normal muscle tone, strength, and reflexes. Unlike most infants with the condition, she could see and hear, and she did not have the common brain and heart defects. We had reason to hope. No discussion related to palliative care ever arose during that time. We articulated our desire to give Annie the same chances as a child without disabilities. There were silent nods of assent.

We were new to the complexities of caring for a child like Annie and frightened of the uncertainties. We were on a difficult journey that would inevitably lead to Annie's death. We depended on our primary care doctor, Dr. David, as one would depend on a life preserver in turbulent waters. Over the course of Annie's brief life, we developed an excellent relationship with him. After six weeks on the ward—mostly for treatment of Annie's hypoglycemia—we were elated to be discharged home. We were incredibly grateful for the wonderful medical care Annie had received.

Weeks later, Annie began to have episodic respiratory distress. At a clinic visit, Dr. David told us that a conservative approach was best and that the problem might resolve itself. No tests were ordered. The distress worsened, and the next day we went to our regional hospital. The doctor immediately sent us to the children's hospital by ambulance. When we arrived, we were relieved to see Dr. David in the emergency room waiting for us. After he reviewed the blood work and x-ray, he told us that the team thought Annie had pneumonia. This seemed like good news. We believed that children can recover from pneumonia.

Hours later, Annie suffered a respiratory crash on the ward. Dr. David took an arterial blood sample and left. We stood there, distressed and alone with a therapist who manually ventilated Annie with a bag mask for over an hour before transferring her to the pediatric intensive care unit.

Sixteen hours later, in the PICU, Annie's oxygen saturation numbers suddenly plummeted, and the therapist again started to manually ventilate her. Within minutes, Dr. David and the intensivist were there. The intensivist asked whether he should intubate and said that the problem was not pneumonia. He described a difficult surgery that Annie would likely not survive. Dr. David stood beside me. I put my hand on his shoulder and asked, "What do you think?" He knew us better than anyone, and we trusted him. We needed him to guide us to make the most important decision of our lives. He indicated that not intubating Annie was the right choice. He stayed with us until Annie died a short time later and then returned to spend time with our family in the bereavement room.

Within days, I had a nagging sense that...