Isabel’s illness took a strange turn: Misdiagnosis and medical decision-making

Isabel Maude's Story:

During the summer of 1999, three-year-old Isabel Maude was diagnosed with chicken pox. Days after the initial diagnosis Isabel's illness took a strange turn that would lead to days of uncertainty, panic, frustration and near-death.

When she developed the typical signs and symptoms of chicken pox, her parents, Jason and Charlotte Maude, were told to expect itching and general discomfort - relatively minor side effects that would soon subside. But a few days later, Isabel developed a high fever, vomiting, diarrhea, and severe pain and discoloration of the chicken pox rash. Follow-up visits to the family physician and Emergency Room (E.R.) reassured Jason and Charlotte that Isabel's suffering was normal and nothing to worry about. Like most parents, Jason and Charlotte trusted the family and E.R. physicians' opinions and went home breathing a sigh of relief and awaiting improvement. But Isabel's condition worsened.

Concerned that her condition was critical, her parents took her back to the E.R. Minutes after arriving, Isabel's blood pressure dropped dramatically and she required emergency resuscitation. Suddenly, it seemed clear that what Isabel had been suffering from was not just chicken pox but a secondary life-threatening infection. Isabel was moved under police escort to the pediatric intensive care unit (PICU) at St. Mary's Hospital in Paddington, London, where Dr. Joseph Britto, a Pediatric Intensive Care attending physician, took over her care.

Isabel was diagnosed to be suffering from complications of chicken pox -Toxic Shock Syndrome and Necrotising Fasciitis, a flesh eating bacteria. Isabel spent two months in the hospital, including a month in the PICU after experiencing multiple organ failure and cardiac arrest. Throughout the entire ordeal Isabel's parent's worried that their daughter may not survive and, if she did, would likely have suffered brain and other organ damage.

To treat the Necrotising Fasciitis Isabel underwent an emergency operation to remove the infected skin, leaving extensive scars around her stomach and requiring multiple reconstructive operations. Today, these scars are the only physical reminder of her brush with death. Isabel made a full recovery and is bright and active elementary school student.

Isabel’s father Jason Maude has created something positive and constructive from the ordeal. Isabel's intense suffering may have been avoided if her doctors at the local hospital had taken all of her symptoms and clinical signs into account and thought of all possible diagnoses, rather than just assuming her symptoms were related to the chicken pox. Isabel was misdiagnosed and needlessly suffered as a result. Rather than suing the hospital for the error, Jason teamed up with Dr. Joseph Britto who conceived the structure of the Isabel clinical diagnosis decision support system. Isabel Healthcare was created, in honor of Isabel Maude and all patients whose lives have been impacted by missed or delayed diagnosis, to help clinicians around the world prevent diagnostic errors.

Today, the Isabel diagnosis support system is being used by doctors, nurses, residents and students to reduce diagnostic and decision errors, and improve patient safety and the quality of care.

Advice for people looking for a doctor: Try to find a doctor who uses a clinical decision support system, email, and an electronic medical record. While frighteningly few of them do, you can probably find a doctor who uses at least one of these modern tools.

Read another of our misdiagnosis stories about a baby girl, or ask for a copy of the source email message. Thanks, Andrew Law.