Misgivings (Essay‪)‬

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."