Background and diagnosis

Jessica Ulimaumi was an Inuk child born on August 18, 1993, at the Arviat Nursing Station in the Northwest Territories. Jessica had a normal delivery at full term, with no apparent complications. Assessment at birth gave no indication of any heart problems. At the request of her mother, Jessica was adopted by relatives, Emalee and John Ulimaumi.

During a September 3, 1993, medical checkup at the Arviat Nursing Station, an examining nurse heard a loud heart murmur in Jessica's chest. This was confirmed by the visiting general practitioner, Dr. Banach, who referred Jessica to Dr. D. Grewar, in the Department of Pediatrics at St. Boniface Hospital. Tests conducted there revealed enlargement of the heart, increased pulmonary blood flow, and a 10 millimetre (in diameter) ventricular septal defect.

Grewar referred Jessica to the Variety Children's Heart Centre. Accompanied by her mother and an interpreter, she was seen by Giddins on October 1. Jessica's length (54 centimetres) and weight (3.7 kilograms) were low for her age, placing her at the twenty-fifth percentile. Giddins found evidence of mild respiratory distress. Jessica was breathing rapidly at 55 breaths per minute. Her lungs appeared to be overinflated, and she had intercostal in-drawing. These were all signs of breathing difficulties. A heart murmur was heard. Giddins was able to palpate (or feel with his hand) Jessica's liver at a distance of three centimetres below the right costal margin. This was a sign of possible congestive heart failure. However, Jessica's colour and the circulation in her limbs were good.

She was diagnosed as having:

• a five-millimetre-diameter atrial septal defect with a left to right shunt
• mild tricuspid valve regurgitation
• enlargement of the left and right atria, as well as the right ventricle
• prominent right ventricular muscle bundles (which were non-obstructive)
• a nonrestrictive 7-8 millimetre ventricular septal defect with outflow extension and left to right shunting.

The fact that the VSD was nonrestrictive meant that the pressures in Jessica's left and right ventricles were equal, putting Jessica at risk of developing pulmonary hypertension.

Healthy heart

Diagram 6.4 Jessica Ulimaumi - pre-operative heart 1 - Atrial septal defect 2 - Ligamentum arteriosus (former ductus arteriosus) 3 - Ventricular septal defect 4 - Abnormal right ventricular muscle bundles

In a letter to Grewar dated October 14, Giddins said, "In summary, Jessica is a six week-old infant with a heart which is currently required to work additionally hard due to left to right shunting present at both the atrial and ventricular levels." (Exhibit 13, page ULI 4) He also said he started Jessica on furosemide (Lasix), a diuretic, because she had mild respiratory distress and lived a long way from a hospital. He planned to see her again in early December or sooner, if symptoms of congestive heart failure developed.

In the letter, Giddins gave no indication that Jessica needed surgery. Nor was there any mention of getting Jessica stronger in preparation for possible future surgery. In fact, no specific medical plan was recommended, other than giving her a diuretic and reassessing her in December.

In his evidence as to why he concluded that Jessica did not need surgery at that time, Giddins pointed out, as he had in the Caribou case, that small ASDs and VSDs in young children often closed on their own without surgical intervention. Jessica was also not in congestive heart failure-a state where the heart is failing to meet the needs of the body-and so performing a surgical procedure on her at that time held more risk than doing nothing. It should be noted that evidence presented to this Inquest suggests that Jessica's defect was large, rather than small. Despite this, Cornel, in his testimony said that it was his practice not to operate on patients with a similar problem until it was making them ill. He said that this rarely occurred before six weeks of age and often not until the child was more than seven months old.

Giddins believed that, given the condition of Jessica's heart, it was essential that her condition be continuously monitored, since congestive heart failure could appear quickly and could be a prelude to death. For that reason, he sent a copy of the letter to Banach and the Arviat Nursing Station. However, Giddins did not specify what additional problems might arise. Jessica returned to Arviat.

In early November, Jessica was again taken to the Arviat Nursing Station. The nurses diagnosed her as having a rapid heart rate and respiratory distress. They arranged to have her seen by Grewar at the St. Boniface Hospital. He in turn referred her to Giddins, who saw her on November 15.

Giddins noticed she had been receiving a lower dose of furosemide than previously ordered and increased it to the amount that he had prescribed. On examination he found that Jessica had gained a pound in weight since her October visit. Her breathing was rapid at 65 breaths per minute, with mild to moderate in-drawing. Her liver span was normal, different from the first examination where it extended below the costal margin. The echocardiogram revealed that the previously noted right ventricular outflow tract musculature (the muscle bundles) was becoming obstructive, causing her heart to work even harder.

In a November 18 letter to Grewar, Giddins wrote, "Jessica continues to demonstrate findings of a considerable left to right shunt at ventricular septal defect level, but it would appear that her lungs are being protected somewhat from high pressures by the right ventricular outflow tract musculature. While she is relatively tachycardic [has a rapid heart beat] and tachypneic [is breathing rapidly], I do not believe she is significantly compromised at this time." (Exhibit 13, page ULI 15) He recommended an increase in her formula concentration and a liquid iron preparation to assist her growth. He indicated that with improved growth, her symptoms might diminish. He also encouraged the nurses at the Arviat Nursing Station to contact him with any concerns and suggested a reassessment appointment in February 1994.

When Jessica returned to Winnipeg in February, tests revealed that the VSD was not closing and that her problems were becoming more serious. She had a minimally restrictive, moderate to large VSD, with a large associated left to right shunt, a restrictive atrial septal defect and biventricular hypertrophy with reduced ventricular compliance (Exhibit 13, page ULI 78). (Her enlarged ventricles were not able to cope with the flow of blood as well as they ought to have.) However, on the Day Care Abstract for her heart catheterization, Giddins also wrote, "No significant ventricular outflow obstruction." (Exhibit 13, page ULI 21) After seeing the results of the tests Giddins referred Jessica to Odim. By this point, Jessica had also been diagnosed with failure to thrive.