As noted above, this case gave rise to the following questions:
- Was there an inappropriate delay between the time of Jessica Ulimaumi's diagnosis and the date of the operation on her heart?
- Was Jessica's family provided with sufficient information to allow them to give informed consent to the procedure?
- Was Jessica healthy enough to undergo an operation?
- Did the length of surgery contribute to her death?
- Were the repairs properly carried out?
- Did irregularities in the process of weaning her from ECMO contribute to her death?
- What was the cause of death and was it preventable?
- Should this death have triggered a review of the program?
This case brought to the fore many of the issues that are central to this Inquest. They include questions of inexperience and competence, lack of preparation, failure in team building and communication, and a failure to undertake a proper review following an operation.
Was there an inappropriate delay between the time of her diagnosis and the date of the operation on her heart?
Once Giddins made a decision to wait to see if Jessica's septal defects would heal themselves, it is unclear if the information essential to determine if this course was working was shared with the Churchill Health Centre, where Jessica was hospitalized.
Her condition did not improve significantly between the time of her diagnosis and her visit to the Variety Children's Heart Centre in February 1994. If anything, there is evidence that her condition worsened. By February 1994, Jessica was diagnosed as having a larger VSD than in October 1993, when she had first been seen. Her shunt had worsened. She was also experiencing congestive heart failure by then and was diagnosed with failure to thrive, a condition closely associated with congestive heart failure.
As was stated in the Caribou case, waiting for a septal defect to close seems to be an acceptable course of action in such cases, and it is hard to fault Giddins for this decision.
However, if the plan was to give Jessica an opportunity to develop further and gain size and strength, not only should such information have been shared with the medical personnel treating Jessica in Arviat, but a plan for that development should have been developed and put into action. That does not appear to have been the case.
Was Jessica's family provided with sufficient information
to allow them to give informed consent to the procedure?
As noted, the family declined to participate in these proceedings. Therefore, it is difficult to determine what they felt they were told. From the testimony of Giddins and Odim, it appears that neither the Ulimaumis nor their advisers were informed about problems arising from the previous cases handled by the team; nor were they told about the team's development to that point. The family would have likely been told about the medical issues their child faced, but without further information from them, it is not possible to determine the extent to which they understood what was involved in her treatment.
The failure to disclose to the family the surgeon's lack of prior experience with performing operations of this nature without supervision is a matter that repeats itself in this case, as it does in others. Therefore the evidence tends to suggest that Jessica's family was not provided with sufficient information to allow them to give informed consent to the procedure.
Was Jessica healthy enough to undergo an operation?
Just before her scheduled operation, an entry in Jessica's medical chart showed that she had been assessed as having had a bout of gastroenteritis-a viral infection. It does not appear that this condition was appreciated before her operation. There is no entry to indicate that the matter of her previous infection had been considered and assessed to determine if the operation should have been delayed. Cornel pointed out that Jessica had also experienced a bout of diarrhea the day before surgery, but she again was not tested for a viral infection before the operation. Symptoms of a pre-operative infection (such as diarrhea) should have led the doctors caring for Jessica to order further tests to determine if she did have an infection. None were conducted. As in the Caribou case, it appears that the doctors' practice at the HSC (of not routinely ordering tests for infection) led to a situation where the existence of an infection was not fully ruled out before a child was sent to surgery.
Did the length of surgery contribute to her death?
As noted in the Caribou case, the bypass and cross-clamp times for this operation were very long. The lengthy times and the failed repair contributed to the problems that arose in weaning her from bypass and ECMO.
Were the repairs properly carried out?
The evidence clearly suggests that the repair was never successfully done. At least once, and probably twice, Odim failed to properly repair Jessica's defect.
Did irregularities in the process of weaning her from ECMO contribute to her death?
The decision to wean Jessica from ECMO seems to have been a necessary one, but the manner in which Odim proceeded was less than acceptable. Odim did not appreciate that the PICU was not adequately equipped to handle any emergencies arising from such a procedure. Odim should not have undertaken the procedure without so determining. He did not ensure that there were appropriately trained and experienced staff, including an anaesthetist, in attendance to assist in this procedure. This fact suggests that he did not carry out this responsibility in a manner that was up to the standards required of him.
However, Kesselman, as the head of the PICU, also had a responsibility to ensure that the child's health was not compromised by such a procedure. In this case, Jessica's health was compromised because the PICU nurses were required to participate in a procedure for which they were neither properly trained nor equipped to carry out, but for which other properly trained and equipped personnel were available.
Odim had every opportunity to request that the procedure be booked in an OR and that the proper complement of staff be present. If the child was not well enough to be moved to the operating room, the OR staff could have attended in the PICU. Odim testified that he was unaware of this, but there is no evidence that he made any inquiries to determine if it was possible to have the OR nurses come to the PICU.
It would appear that Odim proceeded with this matter as he might have in the institutions where he had trained. In his evidence, he suggested that removing patients from ECMO in the ICU was a common occurrence in the institutions where he had trained. That Odim did not know that such practices were not common or successful at the HSC indicates that the entire program started operations in the spring of 1994 without proper preparation.
This was also reflected in the fact that there was a lack of appropriate surgical equipment at the bedside during the weaning procedure. Sending an ICU nurse to look for the Satinsky clamp was necessitated by the poor planning that marked this procedure. The length of time it took for the ICU nurse to find the clamp was a reflection of the fact that she was not trained for this type of procedure and was unfamiliar with the surgical supply room and the type of clamp for which she was looking. This is no reflection on her, because she should never have been put into that position in the first place.
In this case, it also seems clear that there was a tragic failure to clamp the inferior vena cava venous cannula and that this failure contributed to Jessica's massive blood loss and ultimate death. Jessica's condition was severely compromised at the time of the attempt to wean her from ECMO. It is unclear if she would have survived the weaning at all. However, she died due to massive blood loss that occurred through the cannula site and through the unclamped line. It is not clear as to which site caused the greater blood loss, but it is safe to say that both events were preventable.
As noted in the Caribou case, Soder concluded that:
[T]he skill and dexterity of the surgeon performing these operations were insufficient for the challenge of successfully repairing infant hearts with complex malformations. Surgical factors were the prime determinants of fatal outcome in 9 of the 12 deaths. (Boldface in original) (Exhibit 345, page 8)
The case of Jessica Ulimaumi was one of the nine that Soder identified in which surgical factors were a prime determinant in a fatal outcome. In particular, he identified the incomplete repair and the decannulation problems as major surgical factors and the lengthy bypass and cross-clamp times as minor factors.
What was the cause of death and was it preventable?
Based on the testimony presented at this Inquest, the evidence suggests clearly that Jessica Ulimaumi's death was caused by blood loss resulting in a cardiac arrest. This blood loss occurred during a failed attempt to wean her from ECMO and was the result of blood loss at the cannulation site and the fact that a line was left unclamped during decannulation. However, the underlying cause of death, leading to these problems, was the failed repair.
For these reasons, the evidence suggests that this was a preventable death.
Should this death have triggered a review of the program?
This death should have led to a serious re-examination of the program by the persons responsible for it. In his written report to this Inquest, Cornel wrote that the "Death of a patient following repair of a VSD is uncommon and troubling." (Exhibit 353, page 18)
The fact that Jessica died 13 days after Gary Caribou and while Vinay Goyal was seriously ill in the PICU, should have been a warning to Odim, Giddins and their department heads. In his testimony, Cornel was asked if he thought the program should have been reviewed after Jessica's death.
Yes, I think it certainly is a time for review and reflection and regrouping and all of those things.
When I wrote this original report, I hadn't seen the autopsy specimen and I, you know, I thought, well, this was a VSD that was missed, or the patch came off, and that was troubling by itself, but that is understandable.
When things go so completely wrong, as I think they did here, I think it really is time to stop and begin again or, you know, reflect and get some outside help if necessary. (Evidence, pages 44,746-44,747)
As the evidence makes clear, many team members were also starting to think along these lines. However, the growing communication problems, coupled with a lack of supervision by senior HSC staff, meant that no review took place at that time.