R v S.R., 2021 ABQB 771

Court of Queen’s Bench of Alberta Citation: R v S.R., 2021 ABQB 771 Date: 20210924 Docket: 180746950Q1 Registry: Edmonton Between: Her Majesty the Queen Crown - and - S.R. Accused Restriction on Publication Identification Ban – See the Criminal Code ,

section 486.4 . By Court Order, information that could identify the complainant must not be published, broadcast, or transmitted in any way. NOTE: Identifying information has been removed from this judgment to comply with the ban so that it may be published. _______________________________________________________ Reasons for Judgment of the Honourable Madam Justice J. A. Fagnan _______________________________________________________ Introduction

[ 1 ] S.R. is charged with failing to provide the necessaries of life to her child, X (counts 2 and 4), contrary to s. 215 of the Criminal Code , and criminal negligence causing bodily contrary to s. 221 (count 3). [ 2 ] The allegations relate primarily to S.R.’s management of tube feeds for X, during the period from July 6, 2016 to March 5, 2017 when X was mostly in Fort McMurray, and from March 6, 2017 to May 10, 2017, while a patient in the Stollery.

Parties’ Positions [ 3 ] Crown submits that despite ongoing support and direction from medical professionals, S.R. deviated from the feeding plan for X and mismanaged tube feeds, resulting in a loss of weight over the first indictment period leading to X’s hospitalization in March 2017. Crown submits that on many occasions in the second indictment period, abdominal or gastrointestinal (GI) symptoms reported by S.R. were not observed by hospital staff, supporting an inference that many of S.R.’s reports regarding apparent food intolerances were exaggerated or fabricated.

Crown says S.R. procured unnecessary diagnostic and therapeutic medical interventions by giving false and incomplete information to health professionals.

Crown further argues that evidence of S.R.’s conduct in the second indictment period supports the conclusion that she was at least a significant contributing cause of X's inability to receive adequate nourishment, resulting in her failure to gain weight during the first part of her 2017 hospital admission. [ 4 ] Defence argues that Crown’s experts relied on underlying facts that were either unproven or disproved, and their evidence was not fair, objective or non-partisan, nor were they credible or reliable.

Defence argues that S.R.’s reports regarding X’s GI symptoms were never shown to be inaccurate, and S.R. did not have a legal duty to administer nutrition that X could not tolerate. Defence submits that the Crown has not established that X tolerated more nutrition than what she actually received, or that the circumstances were such that S.R. knew or ought to have known that.

With respect to the second indictment period, defence submits that there is no evidence as to when, how often, or under what specific circumstances S.R. may have paused the flow rate of the pump, diluted the formula concentration or cleared data from the feed pump, nor what effect such acts would actually have had on X. Finally, defence argues that there is no reliable evidence that exclusion of S.R. from the care plan was causally related to subsequent weight gain.

Evidence Preliminary Observations [ 5 ] The evidence in the trial includes approximately 10,000 pages of medical records, and over 20 days of oral evidence and legal argument. An extensive collection of X’s medical records from birth to the end of the indictment period was entered as Exhibit 1 for the truth of its contents. [ 6 ] Defence entered some further medical records and called a pharmacological expert witness, Dr. Juurlink. [ 7 ] Crown called two CFS workers (Kim Burke and Wendy Doulton), two police officers (Sgt. Illner and Staff Sgt Meikle), S.R.’s husband Mr.

R., and a number of medical professionals: Drs. Leonard, Chibuk, Hartfield, Walton (pediatricians), Dr. Carroll (pediatric gastroenterologist), Dr. Dibden (CAPC physician), dieticians Rochelle Duff and Carol Graham-Parker, and Nurse Celeste Denny. All of the medical professionals had been directly involved in X’s care for periods of time, except for Dr. Dibden and Nurse Denny. [ 8 ] Mr. R’s evidence largely tracked the evidence of the other witnesses and medical records in terms of X’s medical history and the relevant events. He was working shift work during much of the period in question.

He testified as to his observations and understanding. Not surprisingly, his evidence was not detailed, and at times he could not remember precise dates or sequences of events. Although one would expect he would be defensive of his wife, he appeared to try to answer questions fairly, and not to colour his answers in her favour. He appeared to be attempting to recount the relevant circumstances and answer questions truthfully and to the best of his ability.

Subject to a lack of detail and occasional difficulty recounting the timing or sequence of events, I find that he was a reliable and credible witness. [ 9 ] I held that Dr. Walton’s opinion evidence - beyond her diagnoses during the time of treating X - was not admissible expert evidence, as she had taken on the role of advocate for X, espousing a particular view of S.R. from prior to the first indictment period through the spring of 2017. I held that Dr. Dibden did not qualify as an expert in the area of caregiver fabricated illness. I further held that the medical timeline prepared by Nurse Denny for Dr.

Dibden’s use was not admissible for the truth of its contents for a number of reasons, including that it was incomplete, unreliable and not objective, and had a very high potential to be a time-consuming distraction and misleading. [ 10 ] The evidence establishes that by June 2017, S.R.’s relationship with the medical team at the Stollery had become very strained, and each perceived her, to varying degrees, as being uncooperative, noncompliant, deceitful and manipulative.

The allegation of caregiver fabricated illness which was openly discussed at a certain point led the Crown’s medical witnesses to view S.R. through a particular lens and in some cases probably resulted in some recasting of their own earlier impressions. [ 11 ] In preparing their subsequent reports for trial, none of the medical witnesses had done a true forensic review of X’s case including a thorough review of her medical history, nor a comprehensive assessment of all of the circumstances and changes that occurred prior to or during her admission in the spring of 2017.

All of the expert reports are lacking in terms of anything approaching a thorough review of the relevant medical records. All more or less aligned with significant aspects of a June 26, 2017 letter which similarly lacked any comprehensive review of all of the relevant medical records, and was ultimately found inadmissible for the truth of its contents. [ 12 ] It is also clear that none of the medical professionals qualified as experts could speak comprehensively to the variety of

factors affecting X’s health, given the limits on the scope of each one’s expertise, and the fact that each had only periodic involvement in her care. [ 13 ] Further, not all medical staff involved in significant aspects of X’s care were called as witnesses, for example, Dr. Aronyk (neurosurgeon) and Dr.

Hapchyn (psychiatrist), nor were any of the pharmacists on the Stollery team who would potentially have better knowledge and understanding of the properties, side effects and interactions between the various drugs prescribed for X over time. [ 14 ] Notably, almost all of the medical witnesses testified that Stollery medical staff did not see symptoms reported by S.R. in the spring of 2017. The treating physicians who testified said that they never or rarely observed the symptoms in X of which S.R. complained in the spring of 2017. Pediatricians Drs.

Walton, Chibuk and Hartfield said they did not personally observe X’s discomfort during that time. However, it appears from their evidence that they did not necessarily see her frequently, nor for extended periods of time. [ 15 ] Mr. R. was present during part of X’s time at the Stollery in the spring of 2017. He commented that he would see the doctors once a day in the morning, and every now and then one would come back before leaving in the evening just to check in. Different doctors came and went over time.

The evidence of the physicians who testified is not inconsistent with this observation in terms of their opportunities to personally observe X. Although they referred to discrepancies between reports by the nurses and symptoms reported by S.R., no attending nurses were called by the Crown. [ 16 ] Dietician Rochelle Duff saw X daily Monday to Thursday during the time she cared for her at the Stollery in March, April and May of 2017.

Starting in March 2017, she observed that on some bad days, X’s abdomen looked like she was pregnant with gas and often X was screaming and yelling “no” and she didn’t want her tube feed and would be fighting with S.R. to get her tube-feed going. Ms. Duff also said there were times in April 2017 when X would have a very distended abdomen, and was yelling and screaming in anger or fury, or crying in pain. She said that some days were better than others, and on some days in April 2017, she did not observe these symptoms. [ 17 ] Ms.

Duff’s evidence, as well as other evidence to which I will refer, suggests that the other experts who testified were either ill-informed or discounted or minimized information which was contrary to the view of S.R. to which they had ascribed. I note that Ms. Duff participated in case conferences in the spring of 2017 and therefore information derived from her frequent observations of, and interactions with, X would have been available to others involved. [ 18 ] Ms. Duff testified that over the month of May 2017, X calmed down and was less “angry”. Ms.

Duff inferred that this change in behavior was a result of S.R.’s diminished presence and involvement in her care. Ms. Duff has no expertise which would qualify her to express this opinion. Further, Ms. Duff’s inferences based on her view of S.R. in the spring of 2017 led her to an “epiphany” regarding the reason for X’s weight loss from July 2016 to March 2017, despite her acknowledgment that she was not aware of the details of X’s weight struggles and fluctuating weight between discharge in July 2016 and admission in March 2017. [ 19 ] Pediatrician Dr.

Leonard was called as a Crown expert and treating pediatrician. She was challenged with respect to a statement she made in the parents’ presence during a medical appointment for X to the effect that she had been forced to sign a letter against the parents’ interests. At trial, she initially denied having made the statement. She was not aware that the appointment had been recorded by the parents. When confronted at trial with the recording, Dr.

Leonard acknowledged that she had made the statement, disavowed its truthfulness and said that if she had known she was being recorded, she would have chosen her words more carefully. Similarly, she denied at trial that she had gotten “flack” from her colleagues, despite having communicated this to Mr. R. All of this evidence left the impression that Dr. Leonard was inclined to say what she thought the parents wanted to hear. I find that Dr.

Leonard’s evidence with respect to any communications she says she had with S.R. must be approached with considerable caution due to a concern about both reliability and credibility. [ 20 ] Further, in questioning in relation to Dr. Leonard’s letter written for the purposes of trial and her records, she testified that she forgot to include her text messages with S.R. There are some such text messages in evidence which reflect important communications regarding feeds, among other things.

These communications are relevant to the allegation that S.R. was inaccurately reporting her discussions and communications with medical professionals, including Dr. Leonard. They are also relevant to the extent to which S.R. was relying on Dr. Leonard and others for decisions regarding her feeding of X. [ 21 ] Dr. Leonard failed to mention in her report that Dr. Wilkes had recommended that Amitriptyline be discontinued in mid-2016 and that Dr. Leonard undertook to carry out this recommendation. She denied familiarity with Dr.

Carroll’s March 7, 2017 letter, which was in her clinic file, written to her around the time of X’s admission to the Stollery in which he reviewed test results showing delayed gastric motility among other things, and opined about the anti-cholinergic effect of Amitriptyline. [ 22 ] While Dr. Leonard may not intentionally have failed to include all of this information, these are examples of an inattention to details in documentary evidence which I find characterized Crown’s experts’ evidence in relation to what are fairly described as vague assertions regarding S.R.’s conduct. [ 23 ] On February 16, 2017, Dr.

Carroll reviewed test results indicating gastric dysmotility, an x-ray showing massive gas, parental reports of vomiting Peptamen, noted a distended stomach on examination, and was aware of concerning weight loss. He opined as to possible causes of X’s difficulties, including that Amitriptyline was playing a role in delayed gastric emptying but decided not to change the care plan. He did not instruct the parents to bring X back. X was admitted to hospital weeks later in an emaciated state. [ 24 ] Dr.

Leonard was aware of X’s weight loss and saw X in an emaciated state a week or so prior to admitting her to the Stollery. According to Mr. R., she told them X probably had a stomach bug and sent them home. [ 25 ] While Dr. Carroll and Dr. Leonard and others, were qualified as experts, they were challenged extensively on clinical decisions they had made in their treatment of X. While I have found that those qualified as experts were attempting to approach the case without bias, they came across at times as being defensive of their own clinical decisions.

[ 26 ] The Court has an ongoing duty to exercise a gatekeeping function regarding expert witnesses. For all of the foregoing reasons, the evidence of the medical professionals called by the Crown in this case must be approached with caution.

Summary [ 27 ] The indictment dates span a time from X’s discharge from the Stollery on July 6, 2016 until May 10, 2017, during a subsequent stay at the Stollery. However, the history of her medical care from birth to May 10, 2017 provides relevant context for the allegations before the Court. 2015 [ 28 ] X was born in February 2014. The first few years of her life were marked by numerous attendances upon physicians and other health professionals in Fort McMurray and Edmonton, at clinics and in hospital, surgeries and trials of various nutritional and non- nutritional medications.

She was described by the expert witnesses as a medically complex child. The medical records reflect that by the fall of 2015, she had been diagnosed as having: extremely hypotonic and weak legs and arms, mild facial dysmorphisms, a large head with brachycephalic shape, bilateral metatarsus adductus, significant scoliosis, low lying cerebellar tonsils, developmental delay, lazy eye, bilateral tear duct obstruction, and bilateral middle ear dysfunction. Constipation was an ongoing issue reported by the parents. [ 29 ] Dr. Chibuk, pediatrician, first met X in March 2015 in her clinic for constipation issues.

She sent a referral letter to Dr. Carroll, a pediatric GI specialist. [ 30 ] Dr. Watt noted with respect to a May 25, 2015 attendance that palpation of the abdomen revealed severe constipation on the right side of the abdomen. [ 31 ] Dr. Carroll first saw X and her parents on August 13, 2015 in relation to constipation. Various test results did not reveal any obvious causes. He explained that some children have a tendency to “hold on”, but he thought with X’s other issues it might be a case of slow transit where the bowel does not move stool around the colon at a reasonable rate.

However, the test for that could not be done on a child her age. He diagnosed her as having constipation. They discussed stool softeners (PEG 3350) and Prucalopride, a stimulant (pro- motility agent) to increase the number of spontaneous daily bowel movements. Dr. Carroll did not recall any feeding difficulties reported at that initial meeting. [ 32 ] On August 25, 2015, S.R. phoned Dr. Carroll’s clinic nurse with a concern of additional abdominal pain and fever. She was concerned about the Prucalopride. Dr.

Carroll did not think it was the likely cause as although abdominal pain can be a side effect, fever is not. He told S.R. he thought maybe another illness accounted for both. [ 33 ] Dr. Chibuk saw X on September 8, 2015. S.R. was concerned about blood in X’s diaper. X was constipated. She was still prescribed Prucalopride, but S.R. had stopped giving it due to pain and X was on an increased dose of PEG. [ 34 ] Dr. Chibuk saw X again on October 29, 2015 for a follow up regarding constipation.

She was put on Pico-Salax to get a better clean out, but was passing only small amounts of stool, so they planned to increase to twice a day and then restart Prucalopride. Dr. Chibuk had discussed the matter with Dr. Carroll. [ 35 ] On October 31, 2015, X – around 20 months old at the time - was admitted to Stollery Emergency under Dr. Chibuk for worsening constipation, abdominal pain, poor food intake, and no stooling for 2½ weeks. Her parents reported some episodes of vomiting but she did not vomit while in hospital.

However, at one point, the code team was called as X became unresponsive, her glucose measuring only 0.7. Dr. Carroll described this as an acute life-threatening event with no breathing and a possible seizure. He testified that X was quite irritable on this admission and this was a big issue. An abdominal x-ray on admission did not support massive stool retention. Investigations did not reveal why her blood glucose had dropped so low. He thought at that time that her symptoms might be part of a metabolic dysfunction. [ 36 ] On November 2, 2015, Dr. Carroll suggested discontinuing the Prucalopride.

X was put on IV fluids. Dr. Carroll testified that one of X’s continuing problems was poor oral intake; she was not eating and drinking well. She was irritable and very unhappy. To support her nutrition, a nasogastric tube was used for food and medication. However, Dr. Carroll explained that it is easy for children to pull the tube out, and with X’s distress and irritability, she likely would pull the tube out. The family lived in Fort McMurray and it was not easy to get the NG tube re-inserted.

To guarantee nutrition due to the concern about sugars and the bowel regime, they inserted a G- tube on November 18, 2015, which would not come out as easily as an NG tube, has fewer clogging problems, and does not irritate the child or cause oral aversion. They put X on Peptamen Jr. Dr. Carroll noted that she was eating orally only very small amounts and a quite limited range of food. X tested positive for C-difficile in November 2015, and they had to stop the constipation treatment due to diarrhea.

When she recovered, they put her back on the bowel regime. [ 37 ] While X was in the Stollery, concerns arose during an ophthalmology examination undertaken following the parents conveying certain observations regarding X’s eyes, and reports by S.R. that she had been experiencing intermittent headaches for a number of weeks. The exam showed pressure around an optic nerve possibly indicating high intracranial pressure (ICP). An MRI of the brain and lumbar puncture showed very high ICP with no known cause. On December 13, 2015, a VP shunt was inserted under Dr.

Aronyk to drain fluid from X’s brain to her abdomen. [ 38 ] Dr. Carroll was not involved in the neurological investigations, but he believed the ICP may have contributed to X’s irritability and what her parents perceived as abdominal pain may have been head pain, but it still did not explain the low blood glucose. Dr. Carroll testified that neurological problems can be associated with GI problems.

X was discharged on December 24, 2015 on regular G-tube feeds of Neocate (an elemental, hypoallergenic formula as opposed to less broken down formulas such as Petpamen Jr), then Peptamen for a short time, and then back to Neocate due to S.R.’s reports of constipation, dehydration, vomiting, and bloating. X’s weight at this time was 10.86 kg, which was noted by Home Nutrition to be in the 43 rd percentile weight for her age. X was also on PEG

(a laxative), vit B2, topiramate for headache and morphine as needed. [ 39 ] Dr. Carroll’s plan was to get X back on oral feeding, with the G-tube as a backup due to her blood glucose and he would have communicated this to the parents, but there was no specific timeframe, as she was recovering from surgery. The ward dietician and Home Nutrition worked out the details. [ 40 ] Mr.

R. recalled that prior to this point in time, X had been starting to have “episodes”; she could be sitting in her crib laughing one minute and it was like a switch was flipped, and she would start flailing, screaming, holding her head, and smashing it against the side walls of crib. They had her on morphine for the pain from headaches. Mr. R. said X’s behaviour changed drastically after the VP shunt was installed.

Her episodes disappeared, her feet and hands started growing, she had been diagnosed with scoliosis which started to straighten out, she started talking more, wanted to try to stand up, and started trying to walk when she would not even crawl before. 2016 [ 41 ] X was admitted to the Stollery two weeks later, from January 10 to 15, 2016, with reports of vomiting. A possible shunt issue was ruled out. Although Dr. Carroll did not personally see vomiting, he believed other members of the nursing staff observed this. A gastric emptying study showed no delay in emptying.

X continued on Neocate and was allowed to eat orally as capable, and was taking in small amounts while in the hospital. [ 42 ] S.R. had frequent communications with various medical professionals about X’s digestive symptoms and what S.R. was trying to do in terms of formula, volume and rate or frequency of feeds.

For example, on January 22, 2016, she reported to dietician Graham-Parker that the vomiting had stopped but due to continued difficulties with bloating, S.R. would pause the G-tube feeds to give relief when she perceived that X was uncomfortable. [ 43 ] X was in hospital on January 24, 2016 for a planned shunt revision. S.R. reported extreme irritability, feed intolerance, and X holding her head due to headaches. The shunt revision was postponed when X was found to be positive for Influenza A. She ultimately did undergo a shunt revision and left sub-temporal decompression on January 29, 2016. Dr.

Carroll said her irritability and agitation then improved. X’s care was transferred to pediatrician Dr. Walton. X was exclusively on G-tube feeds post-operation. She was still taking small amounts of oral liquid. Dr. Carroll said it is not unusual for children to take some time to get back on a regular diet after surgery. He expected X would get back to full oral feeds. He discussed changing from Neocate as he did not think there was a good reason for an elemental formula but S.R. was insistent on a very slow grading up of feeds.

She was also resistant to a quick wean off of morphine as she was very worried that X would be in pain. Dr. Carroll said it is hard to know how quickly to wean a patient off of pain medication like morphine, but it can promote constipation and slow intestinal transit. Dr. Carroll saw periods when X was irritable and potentially in pain. He said that constipation was not a major issue at that time, as physicians tolerate lower stool output while a child is on morphine post-op. [ 44 ] Dr. Leonard took over X’s primary care on February 1, 2016 for the last three days of X’s hospital stay.

X was not tolerating feeds and Dr. Leonard was going to keep working on that. She slowly weaned X from a 19-hour feed, but sent her home before she got to a baseline feed. She gave instructions to S.R. to compress the feeds to five times per day. Dr. Leonard did not recall what formula was being used. The home medications noted on the discharge

summary include morphine. [ 45 ] On February 11, 2016, S.R. reported to Dr. Leonard that X was not tolerating her feeds. Dr. Leonard said it was not uncommon not to tolerate feeding following surgery due to nausea from pain medications, and hydration would be the concern over the short term. X was urinating well so Dr. Leonard was not too worried at this time. No weight was recorded at that time. [ 46 ] Starting in February 2016, Dr. Leonard saw X from time to time regarding constipation and sleep problems. X was still being fed by G-tube.

Her weights were not recorded. [ 47 ] S.R. reported X having increasing headaches, irritability and continued digestive symptoms such as bloating, occasional diarrhea and vomiting, chronic constipation and stomach pain. She also reported that X had sleep issues.

Various medications were used to clean out her bowels, some of which were tolerated better than others. [ 48 ] S.R. expressed to various medical professionals that she perceived X’s discomfort was reduced by the elemental formula Neocate, occasional breaks from continuous feed, and monitoring of the volume, as she perceived that X seemed to have problems once she reached a certain volume. S.R. would also consult with respect to care of the stoma site when it appeared to be irritated.

She reported in February 2016 that X had been vomiting since the pump rate was increased and she was only taking half volume at that time. [ 49 ] X was re-admitted to hospital on February 15 to March 14, 2016 on S.R.’s reports of extreme irritability, head banging and feed intolerance. She reported slowing the feeding to try to monitor it. [ 50 ] Dr. Walton had some involvement with X on February 16, 2016 on a referral from Dr. Aronyk. She understood that there were reports of X crying and being in discomfort.

She did not observe X to experience episodes of discomfort, but said that it was reported in nursing notes. Dr. Walton testified that toddlers have big tummies and X’s was maybe slightly more protuberant, but was certainly not distended and was not tender. Dr. Walton also thought X was not gaining weight. She noted that X’s feeds were turned off frequently by nursing staff or S.R. for various reasons, including for tests or treatment. X was not stooling regularly and had quite significant constipation. Dr.

Walton thought the morphine which had been prescribed might be causing constipation and a bowel clean out was done. Dr. Walton also began to suspect that S.R. might be part of the problem. [ 51 ] Dr. Carroll saw X on February 18, 2016, within days of being admitted and described her as definitely not her usual self: she was distressed, screaming, thrashing, and he was unable to adequately examine her. Head banging was a big concern. X was holding her head and would throw her head back, and hit her head into her hands. Her weight was tracking along 50% so it appeared she was getting enough nutrition.

S.R. reported that X was struggling with higher G-tube feeds. S.R. and the hospital team slowed down the feeds on worries that her distress was somehow related to feeds.

[ 52 ] For abdominal pain, Dr. Carroll recommended stopping Domperidone (motility agent) which can cause cramping and other GI issues. It had been prescribed by another GI physician. No other changes were made to X’s bowel care at the time. X was having a very small amount of oral feeds. She was very distressed and irritable, so it was not very easy to feed her. Dr. Carroll did not have a good explanation for what was going on.

He suspected perhaps a shunt problem as the distress seemed localized to X’s head, and if it was affecting brain function, it could have an effect on gastric motility which could be contributing to the complaints. Alternatively, X might just have been less inclined to feed if she was not feeling well due to shunt problems. When the medical team tried to feed X more or have her sleep at different times, S.R. said they were not addressing what she thought was the primary concern. Dr. Carroll thought there was some inconsistent reporting in that S.R. had told another medical professional that Dr.

Carroll said not to stop the Neocate. However, he also testified that he had supported staying on it, but the feeding plan had been to continue on Neocate and gradually increase to oral feeding. He saw X every few days in the hospital. S.R. and Mr. R. reported bloating and abdominal distension, rock hard by the end of the day and then normal in the morning. Dr. Carroll did not see this, but he said he certainly saw X distressed and upset. [ 53 ] X began 5 mg/day of Amitriptyline on February 19, 2016, administered in the evening.

Amitriptyline is a tri-cyclic anti- depressant which is rarely prescribed for children. Dr. Chibuk testified that 25 mg/day is a low adult dose. Dr. Carroll thought a typical dose for children would be 5-10 mg up to 10-15 mg but it would depend on weight and indication. Mr. R. said that as an infant, X would sleep for 12 hours straight, and nap another 5 or 6 hours. When she started receiving Amitriptyline medication for her head, she went from sleeping too much to not sleeping enough. To counteract this, the parents were told to also give her melatonin. This is consistent with the medical records.

The prescribing physician did not testify. [ 54 ] In March 2016, X contracted C-difficile again, causing diarrhea. She was discharged on March 14, 2016. Dr. Carroll prescribed a probiotic and suggested reducing fermentable sugars to limit gas. [ 55 ] During a March 30, 2016 visit to the Home Nutrition clinic for a G-tube site assessment, X became irritable and was very hypersensitive to any G-tube assessment or care. [ 56 ] X was re-admitted to the Stollery on March 31, 2016 to have her G-tube converted to a low-profile device which is done three months after the initial tube is placed.

On March 31, 2016, dietician Ms. Graham-Parker noted that S.R. reported she was adjusting feeds at home and was not following the

schedule she went home on of 750 ml Neocate with fluid of 600-800 mls. S.R. reported providing 50 ml over 10 hrs of Neocate per day, varying delivery if X was irritable or grabbed at her stomach. They had a conversation about increased fluid to prevent constipation. [ 57 ] Dr. Kolski saw X for a consult regarding her GI/feeding issues including constipation on April 9, 2016. The medical records indicate that at an appointment with Dr. Kolski on May 10, 2016, regarding feeding problems and irritability, it was noted that X had limited tolerability with the exam. Dr.

Kolski did not testify. [ 58 ] In early May 2016, the R. family was evacuated from Fort McMurray to Edmonton due to wildfires. They were not able to return to their home until around September 2016. [ 59 ] Dr. Foulds’ discharge

summary of May 12, 2016 noted “successful clean out [with Golytely (electrolyte version of PEG)], elemental formula suggested; ami 7.5 mg more comfortable at night”. Dr. Foulds wrote that GI services believed X had neuroenteric hypersensitivity so an elemental formula (like Neocate) via G-tube was suggested. Dr. Foulds noted X had “responded nicely” to a trial of Amitriptyline 7.5 mg and appeared much more comfortable at night. S.R. was instructed to actively and aggressively treat X’s constipation. Dr.

Foulds did not testify. [ 60 ] On May 20, 2016, X weighed 13.135 kg which was recorded as putting her in the 75 th percentile. Therefore, the evidence to this point is that she was thriving while being exclusively fed Neocate by G-tube and while S.R. was reportedly in the habit of pausing feeds and monitoring volume to give relief when X was uncomfortable. It is notable that X was thriving in terms of weight despite all of her other medical issues and treatments previously described, and receiving a reduced amount of Neocate as reported in March 2016 of 50 ml over 10 hrs.

Dietician Cheryl Harmata noted on May 20, 2016 that X continued to gain weight and trend well. She recommended the same feed goal of 750 mls Neocate and an increase in fluids as possible. [ 61 ] On June 7, 2016, X (at 2 years, 4 months) was admitted to the surgery unit with initial complaints of head banging, sleep disturbance, distress, and irritability. S.R. expressed concern about possible shunt issues. On that date, admission records indicate X’s weight as being 13.60 kg. Neurosurgery felt the shunt was working properly. X was transferred from surgery to the medicine ward.

Rochelle Duff stated that X’s weight before starting weaning from tube feeds was 14.2 kg which was assessed to put her in the 75 th percentile, with a BMI in the 98 th percentile. X’s measurements at that time were excellent, her weight was higher than it needed to be and she was a chubby little girl. S.R. was involved in the feeds, and there is evidence that she would pause feeds in the hospital. Therefore, the evidence to this point is that X had continued to thrive on Neocate by G-tube, as managed by S.R. [ 62 ] Dr. Hartfield provided care to X for 10 days starting on June 8, 2016.

She found nothing remarkable in the physical examination that would explain screaming episodes and problems with sleep. Dr. Hartfield did not recall specifically seeing X have an episode of distress, but the team had seen X’s “outbursts” in the hospital. X was on melatonin, Amitriptyline and chloral hydrate for sleep. They stopped the chloral hydrate as it can be associated with behavioural problems. Dr. Hartfield did not recall if anyone considered reducing the Amitriptyline. She said that X was sleeping well while in the hospital.

The team also felt there was no medical reason for X to be on Neocate, which is expensive, the G-tube posed certain risks, and it was important that X eat orally. (Ms. Graham- Parker testified that the parents were subsidized for formula and although Neocate was a more expensive formula, the parents paid $75/mo regardless of which formula was used.) S.R. expressed that she thought X was having issues with feed tolerance. She was eating small amounts, but was fed primarily by G-tube. They began oral feeding. X seemed to enjoy and tolerate it.

S.R. was very concerned that a change from Neocate would result in a flare-up of X’s abdominal symptoms and wanted to stop the feeding plan. [ 63 ] On June 13, 2016, S.R. wanted to take X home as no shunt dysfunction had been found. [ 64 ] Dr. Carroll testified that one of the medical team thought X’s problems were more behavioral, pointing out that she had had

multiple surgeries and did not have a good nighttime routine in hospital. Dr. Carroll said that S.R. was resistant to changes in the feeding routine; she thought the focus on behavioural causes was misplaced, and that the medical professionals were missing organic causes. Dr. Carroll explained to her why transitioning the feed was important. He said S.R. was hopeful they would get there, but was still very concerned about oral feeding.

S.R. expressed apprehension regarding discontinuing the elemental Neocate formula as she reported that her attempts to increase solid foods over the preceding months had resulted in severe constipation and a need to limit X’s Neocate feeding rate via G-tube. [ 65 ] Dr. Carroll said the medical team was concerned that S.R. would administer the chloral hydrate through the G-tube while X was sleeping to help her sleep through the night. However, Dr. Hartfield who was the responsible doctor during that time testified that X was being woken up at 2:00 a.m. for a dose. In any event, Dr.

Carroll testified that the issue of chloral hydrate was raised with S.R. and the chloral hydrate was discontinued. [ 66 ] Medical records from June 16, 2016 indicate that Dr. Wilkes recommended discontinuing melatonin and Amitriptyline, noting that Dr. Leonard was aware and would follow up with these suggestions in the community. Dr. Hartfield did not recall whether she discussed this plan to wean these medications when X’s care was transferred to Dr. Foulds. Dr. Wilkes did not testify. [ 67 ] Dr.

Foulds took over on June 17, 2016. [ 68 ] Dietician Rochelle Duff testified that when X came from the surgery unit to the medicine ward in June 2016, she was on feed of 500 cal/day. X was transitioned to oral feeding toward the end of her admission. Ms. Duff was aiming to see what X would eat orally and then would top up with the G-tube to 500 calories/day. X exceeded that goal on June 29, 2016, consuming 659 calories orally with no G-tube top up. The medical team did not perceive that she was showing signs of feeding intolerance. Ms.

Duff did report that it was difficult to get her to drink enough fluids to keep her hydrated. Within two weeks, X was weaned off of tube-feeds except for fluids. Ms. Duff testified that X typically limited her oral fluid intake to 400-500 mls which was less than half of the 1,200 mls they wanted her to consume. They continued to give her water through the G-tube to meet her fluid needs. She was discharged within a week of going completely off G-tube feeds. Ms.

Duff estimated that X required 500-750 calories/day to thrive at that time. [ 69 ] On X’s discharge on July 5, 2016 - the beginning of the first indictment period - she weighed 14.1 kg. She had lost 100 g in hospital in the process of being weaned from tube feeds and despite an increase in calories. [ 70 ] Written instructions provided by Ms. Duff on discharge on July 5, 2016 stated: “Formula: Fluids only; Calories: 775 calories per day from food; Volume: Aim for 150ml water 5x/day + oral fluids. Goal is 1200ml fluid/day.” The G-tube was to be used to flush in fluid daily up to 1500ml/day. The feeding

schedule states: “We are not recommending any tubefeed

schedule for formula as she likely does not need it. We know there will be times of lower oral intake that might worry you, but know that X requires less energy. Use her tube to ensure she is hydrated and likely her intake will improve in a day or two. Should X not feed any solids at all for a period of 3 or more days talk to Dr. Leonard or call Carol for advice. Because of X’s varied diet we know she can tolerate many whole proteins and does not need an amino acid based formula like Neocate. In discussion with Dr.

Leonard, we were thinking a formula like Compleat Pediatric might be a better fit …or you could discuss with Carol about pureeing foods to syringe into her G-tube during those tough times.” The instructions stated that it was not recommended to provide more than 1500 ml/day of fluid due to risk of electrolyte disturbances. [ 71 ] Dr. Carroll was involved in developing the feeding plan reflected in the discharge instructions.

He testified that given X’s up and down intake, the intent was that if she lapsed back to one of her earlier presentations with head banging, irritability, and poor oral intake, the G-tube could be used while they arranged for her to be reviewed. As well, they wanted to avoid another low blood glucose incident which had never been explained. [ 72 ] Dr. Leonard testified that she was aware that the instruction on discharge was to feed X fully orally as long as it was tolerated, and if oral feeds were not tolerated, then the parents would provide Pediatric Compleat. Dr.

Leonard could not say if X had previously been on a different formula. Dr. Leonard’s July 6, 2016 discharge

summary indicated the plan was to use Pediatric Compleat if X was not eating orally. X was taking 10 mg of Amitriptyline per day. Dr. Leonard noted in the discharge

summary: “Over the next month, I plan to slowly wean down the melatonin and the Amitriptyline and help her get off these 2 medications, as well. I will follow up with X in l weeks' time to ensure that she has had appropriate weight gain. Her weight at discharge was 14.105 kg”. Although Dr. Leonard undertook to wean her off Amitriptyline, as had been recommended by Dr. Wilkes on June 16, 2016, this did not occur. [ 73 ] S.R. expressed doubt that X would be able to continue with completely oral feeds. [ 74 ] In July 2016, Dr.

Hapchyn met with X, diagnosed her with significant sleep concerns, and increased the Amitriptyline to 15 mg/day. Dr. Hapchyn did not testify. [ 75 ] Dietician Carol Graham-Parker from the Pediatric Home Nutrition Support Program testified that on July 18, 2016, she called S.R. to provide support and learned she had started tube feeding X Neocate again as she did not feel X was taking in enough calories. Ms. Graham-Parker spoke with Dr. Leonard about reinforcing X’s feeding skills and her view that the G-tube was not needed. Ms.

Graham-Parker set up a plan for S.R. to attend the Home Nutrition clinic for mealtime support. S.R. indicated she was then staying in Fort Saskatchewan and that it was a long way to come in, but she did set up some times. S.R. brought X in, as well as her son. She did not bring food as had been requested. Ms. Graham-Parker perceived that S.R. was resistant to the whole process. Ms. Graham-Parker fed both children. The visit was one hour long. She did not observe X to experience discomfort during that time. X did not have any difficulty eating orally. [ 76 ] Mr.

R. testified that X’s desire and ability to eat orally was never in question. [ 77 ] On July 22, 2016, Dr. Leonard saw X. S.R. reported frequent stooling which Dr. Leonard indicated would be a sign of gastroenteritis. Dr. Leonard would have discussed with S.R. that Pediatric Compleat was the formula in the discharge plan if X was not tolerating oral feeds; Dr. Leonard did not recall if there were concerns. S.R. and Dr. Leonard also texted from time to time - often after hours - if X was reported to have a fever or was not feeding.

[ 78 ] On July 25, 2016, Ms. Graham-Parker noted that S.R. reported that the hotel in Fort Saskatchewan was unacceptable so they had moved to a hotel at West Edmonton Mall. S.R. reported that X was eating one meal/day and occasionally two meals and did not indicate hunger so she was giving her 100 mls of Neocate by tube/daily. Ms. Graham-Parker observed X to eat on that occasion without difficulty. [ 79 ] Carol Graham-Parker testified that she had observed X eating orally at Home Nutrition without any obvious discomfort. The visits were scheduled for one hour.

She agreed that if X had reacted more than an hour after consuming food, she would not have observed it. Mr. R. recalled taking X to appointments in Edmonton to see Home Nutrition to discuss her status. He recalled one time having an appointment with Dr. Carroll later in the day after a woman at Home Nutrition had given X some biscuits. After leaving, within half and hour when they were waiting in the office for Dr. Carroll, X was screaming, rolling on the floor, saying her tummy hurt, and basically cried herself asleep by the time the doctor arrived. Mr.

R could not say on what date this occurred. [ 80 ] S.R. cancelled a July 28, 2016 appointment at Home Nutrition, reporting that her son had an appointment. She told Cheryl Harmata that X was just now starting to sleep four hours consecutively during the night which the family did not want to disrupt and X could only tolerate Pedialyte and Neocate at the moment. [ 81 ] On August 26, 2016, X was recorded at Northern Lights emergency as weighing 13.6 kg, a .5 kg loss from discharge on July 5, 2016. [ 82 ] Dr. Leonard was not worried about the weight loss at that time. Dr.

Leonard talked with S.R. about going back on G-tube feeds, with Home Nutrition to decide the volume. [ 83 ] Mr. R. testified that X ate for some time orally after her discharge in July 2016 when they started to notice a decline. He could not recall exactly when, he said variably it was after a few weeks, 1½ to 2 months, it could have been in September 2016. Mr. R. was working shiftwork, 6 days on, 6 days off. During his 6 days on, he worked 3 days followed by 3 nights. S.R. was the primary caregiver while he was working. On his days off, they shared caregiving duties equally. Mr.

R. testified that X loved to eat orally. She continued to do so after discharge in July 2016. He was involved in feeding X when he was off work. He recalled that within an hour of eating, X would be bloated, in pain, clutching her stomach, rolling around, with her knees up, and they could not get her to calm down. He also said she had constipation. He testified that they tried eliminating certain foods for awhile, but this only ever resulted in temporary relief and they went back to the G-tube feed. He said X improved greatly after that – she seemed to tolerate the food much better by G-tube.

She was on Neocate 1.0 calorie density. [ 84 ] Dr. Leonard saw X on September 1, 2016. She weighed 13.6 kg. She had lost .5 kg since her discharge on July 6, 2016 and had been on fully oral feeds for a time, so she talked with S.R. about going back on tube feeds, with Home Nutrition to decide the volume, etc. Dr. Leonard does not recall what direction she gave at that time, but the practice would be to never completely eliminate oral feeds. The dietician at Home Nutrition would figure out the feeds. Dr. Leonard did not recall if they discussed feeding intolerance.

When asked about the significance of the amount of weight lost, Dr. Leonard said it was not necessarily very worrisome; she could not say how much X would have been expected to gain in the prior eight-week period, but she would have used the growth curve chart and plotted her weight. Dr. Leonard did not recall what symptoms of intolerance S.R. reported, but she usually talked about pain and distension. [ 85 ] A further Home Nutrition appointment was scheduled by Ms. Graham-Parker’s office for September 9, 2016. However, S.R. reported that she had to return her mother-in-law to Fort McMurray.

Again, S.R. was transitioning back to Fort McMurray sometime in late summer of 2016 after the wildfire evacuation had brought them to Edmonton in the spring. [ 86 ] After the family returned to Fort McMurray following the evacuation, Dr. Leonard confirmed that they did not have to continue to attend regular Home Nutrition visits when they were not in Edmonton. [ 87 ] On September 15, 2016, Ms. Graham-Parker discussed with S.R. providing one can of Pediasure orally for calorie supplementation and she sent out sample cases. S.R. returned the call on October 14, 2016, and said X hated Pediasure.

She agreed to come back into the clinic to try different things. On October 14, 2016, S.R. was made aware that no formula would be ordered by Home Nutrition until X’s feeds were better established. [ 88 ] On October 19, 2016, a throat culture was taken at Northern Lights in Fort McMurray. X was transferred to the Stollery on reports including unusual eye movement. It was reported at that time that her oral intake was down though she was not vomiting. Dr. Chibuk saw X at the Stollery around this time. Her weight on October 20, 2016 was recorded at 14.6 kg. She was on Amitriptyline of 7.5 mg.

Nursing notes indicate she had some vomiting, irritability, screaming and was fighting at times. The throat culture came back indicating that X tested positive for a strep infection. Dr. Chibuk saw X at the Stollery in Edmonton in relation to this event as well. [ 89 ] On November 10, 2016, Ms. Graham-Parker recorded X’s weight at 14.5 kg putting her in the 77 th percentile. This was a .9 kg gain from the end of August 2016. The parents informed Ms. Graham-Parker that X was not tolerating oral foods.

S.R. reported that difficulties in oral feeding had started again in September 2016 so she had restarted tube feeds with leftover Neocate. S.R. said that X was no longer tolerating rice milk which caused diarrhea. X would only drink 500 mls fluid on a good day and S.R. reported that if she consumed less than 1000-1500 mls, she would get constipated. Ms. Graham Parker told them to speak with Dr.

Carroll about the feeding plan. [ 90 ] Also, on November 10, 2016, Cheryl Harmata of Home Nutrition noted that during her assessment of the G-tube site, X requested numerous times to be fed via G-tube and became frustrated that Ms. Harmata was not providing a syringe feed. [ 91 ] On the same date, November 10, 2016, X also saw Dr. Carroll. He recorded her weight at 14.5 kg, being in the 77 th percentile, with a BMI in the 75 th percentile. Therefore, the evidence to this point is that X was thriving on G-tube feeds of Neocate.

The parents reported feeding issues, including major distension by day’s end but better by morning. On examination, X’s abdomen was soft and non-distended. Dr. Carroll wrote “possible gastric accommodation problem or intestinal dysmotility”. He noted previous trials of

promotility agents had not been well tolerated, and “possible aerophagia though parents not able to vent a great deal from g-tube”. Dr. Carroll testified that when he saw X, she seemed to be in pretty good spirits. The parents felt she was better when on Neocate and low fermentable foods so she had gone back on Neocate, and was off most oral foods, although she was taking in watermelon, grapes, and peaches in water. Dr. Carroll thought this was inconsistent with intolerance as they are high in sugar. Dr.

Carroll said that although his preference was for X to stay on a formula containing protein (Compleat), they ultimately stuck with Neocate Jr as it seemed X was not tolerating the other formula very well. [ 92 ] Dr. Leonard also saw X on November 10, 2016. She noted that S.R. said the GI told her to do a full tube feed, staying on Neocate. The parents had weaned X completely off any oral foods the week prior, and they discussed possible treatments for X’s poor sleep. Dr. Leonard recorded X’s weight at 14.2 kg. Dr.

Leonard said that feeding intolerance was more of a GI issue, so if a GI doctor was actively following X, Dr. Leonard would not interfere. [ 93 ] On November 17, 2016, S.R. called Ms. Graham-Parker to order Neocate. Ms. Graham-Parker called Dr. Leonard for an update on the feeding plan. Dr. Leonard had not heard from Dr. Carroll and advised her to contact Dr. Carroll and follow his suggestions. Ms. Graham-Parker believed that Dr. Carroll had wanted X to go back to Peptamen Jr. [ 94 ] On November 18, 2016, X’s Amitriptyline was increased to 20 mg. [ 95 ] In a letter dated November 22, 2016, Dr.

Carroll conveyed his findings from November 10, 2016 to Dr. Leonard. The plan included a solid and gastric emptying study to re-evaluate gastric motility. Dr. Carroll wrote “I would favor her continuing on a polymeric formula but maybe we need to try something more hydrolyzed. We could try Peptamen Jr and see how she tolerates this”. [ 96 ] On December 2, 2016, a second gastric emptying study was performed. “Findings: Delayed liquid gastric emptying is observed, with a half emptying time calculated at 99 minutes.

This is significantly delayed compared to the prior liquid gastric emptying study (half emptying time of 54 minutes). Three episodes of gastroesophageal reflux were visualized during the study. Impression: Delayed gastric emptying, new from the January 2016 gastric emptying study. Gastroesophageal reflux.” Dr. Carroll said delayed gastric emptying is a symptom but not an explanation of the problem. He testified that the results were a shift from the prior study, and it seemed that for whatever reason, X had a dysfunctional gut.

He said they continued with the Neocate Jr and she was tolerating it a bit better, but her weight had stalled. [ 97 ] On December 5, 2016, X’s weight at Dr. Leonard’s office was recorded as being 14.5 kg. Dr. Leonard noted good weight gain since last visit, although it was the same as recorded by Ms. Graham-Parker on November 10, 2016 and only .3 kg higher than Dr. Leonard’s record of that date. Dr. Leonard also noted on December 5, 2016: “does have ++croupy cough”. [ 98 ] On December 16, 2016, S.R. called Ms. Graham-Parker as the clerk would not send out Neocate without dietician approval. Ms.

Graham-Parker advised that Dr. Carroll would like to try Peptamen Jr. S.R. said X had been on it in the hospital and it did not work well. S.R. reported giving X 1000-1500ml of Neocate Jr/day. They discussed giving X 500 ml of Peptamen mixed with 500 ml of Neocate. [ 99 ] On December 22, 2016, S.R. texted Dr. Leonard, asking if they could check X’s iron as she was seemed to be drained of energy after two hours. [ 100 ] X was admitted to Northern Lights Health Centre in Fort McMurray on that date, December 22, 2016 until December 23, 2016. She weighed 13.6 kg, down .9 kg from December 5, 2016.

Her right eye was droopy. S.R. denied she had any headaches or vomiting. Medications noted included Amitriptyline 30 mg at night (although other records indicate the dosage at the time was 20 mg). On examination, X was fussy and difficult to examine. Her abdomen was soft with no masses. The right eye was dilated and nonreactive. On admission, the left pupil was normal and reactive. The left eye also started to dilate slowly. She was transferred to Edmonton for possible shunt management. Her pupils remained different sizes upon examination. [ 101 ] The Northern Lights health centre discharge

summary for December 22, 2016 to December 23, 2016 indicates that X was fussy and difficult to examine, noting obvious hydrocephalus. A patient care chart indicates scheduled meds for December 23, 2016 including: Amitriptyline 20 mg once daily at bedtime, iron suspension 6 ml BID, Melatonin 5 ml. The infant care record for December 23, 2016 indicates Neocate 600 ml @ 90 ml/hr. 2017 January to March 6, 2017 [ 102 ] At the beginning of 2017, Mr. R.’s shifts switched to 6 straight days and 6 days off.

He testified that X started to lose weight, especially at the beginning of 2017, and they were getting very concerned. [ 103 ] On January 27, 2017, S.R. left a message with Home Nutrition, stating “please call me back before the weekend, X is vomiting with feeds and has lost weight”. S.R. said X had been 32 lbs (14.5 kg) at Christmas and was now 26 lbs (11.79 kg). S.R. told Home Nutrition she was running the feeds at 90 ml/hr and there was vomiting after 300-400 mls; X was only getting around 600 ml/day. Debbie Blatz of Home Nutrition told her to contact the pediatrician. S.R. stated the office was closed and Ms.

Blatz told her that she had to talk to the pediatrician as Ms. Blatz was unable to advise her on changing feeds. In a text exchange, Dr. Leonard told S.R. to chat with Home Nutrition as “this feed [Peptamen] was clearly not the right choice for X”. S.R. responded that Home Nutrition had said to go through Dr. Leonard. Dr. Leonard texted S.R. on January 30, 2017 reporting that Dr. Carroll said to go back to the old formula for now so X can gain weight. Dr.

Leonard explained at trial that she does not have the knowledge to decide which formula is better. [ 104 ] Therefore, the evidence is that X weighed 11.79 kg on January 27, 2017, down 1.8 kg from December 22, 2016. [ 105 ] On February 1, 2017, S.R. left several messages and called Home Nutrition, stating that X was not tolerating the Peptamen

Junior and had lost over 7 lbs (3.18 kg) in the last two weeks. S.R. said she had spoken with Dr. Leonard who was attempting to reach Ms. Graham-Parker to approve X going back on Neocate Jr. [ 106 ] Mr. R.’s evidence confirmed that in early February 2017, they changed from Peptamen to Neocate as X did not seem able to tolerate the Peptamen and they knew she tolerated Neocate. [ 107 ] The discharge

summary for Northern Lights Health Centre for February 12, 2017 to February 13, 2017 indicates: examination revealed a very uncooperative child, difficult to examine. X was admitted for abdominal distension, painful urination and a few vomiting episodes over the past three weeks. Neuromuscular evaluation was not done due to lack of cooperation. A shunt series x-ray was normal. Lab tests were all normal, but a KUB x-ray showed severe constipation. Following admission, she was on her home medication, including Amitriptyline. She was quite irritable during her stay in the hospital.

Giving her Lax-A-Day did not work, and she did not have any bowel movement during her stay in the hospital, so it was decided to start her on GoLytely through the G-tube. X was discharged home, with advice to continue current medication at home. Final diagnosis: constipation. The nursing record and Medical Reconciliation Admission Order for February 12, 2017 notes 20 mg Amitriptyline. She weighed 12 kg, elsewhere indicated as 12.66 kg, up slightly from January 27, 2021. Further notes from that date indicate G-tube site healthy, abdomen hard and slightly distended, no pain reported on light palpation.

February 13, 2017 diagnostic imaging notes fecal loading of the rectum and sigmoid colon region. [ 108 ] S.R. called Dr. Carroll’s office on February 13, 2017 for an appointment. [ 109 ] Dr. Carroll saw X on February 16, 2017. She had regained some weight since going back to Neocate Jr. weighing 12.935 kg, another increase from February 12, 2017, but overall she had gone from the 76 th percentile on November 10, 2016 to the 31 st percentile in February 2017. Dr. Carroll decided not to make any changes to her care. He said the priority was for her to gain weight. In a letter on that date, Dr.

Carroll noted a 7 lb (3.175 kg) weight loss in January 2017 and a gain of 3 lbs (1.36 kg) since going back on exclusive Neocate Jr with no oral feeds at present as they were previously poorly tolerated. He noted that X had been placed on Peptamen in December 2016 and changed back to Neocate two weeks prior. She improved with less emesis on Neocate but, he noted, increased +abdomen distension persisting. An abdominal xray from February 13, 2017 showed “+++gas”. Medications included Amitriptyline 20 mg. On exam, X’s abdomen was mildly distended. Dr.

Carroll wrote: Her suspected syndromic myopathy would place her at increased risk for GI tract motility issues (such as constip, delayed gastric emptying, transit issues) and it is possible that more complex food digestive processes may be impacting her motility regulation. This may explain why she responds better to an elemental diet. Similarly, the tolerance of Pedialyte over Infalyte may be related to the presence of rice syrup in the latter versus dextrose alone. Rice is a notorious trigger for protein intolerance disorders such as FPIES.

May be triggering motility issues akin to a pseudo obstruction type of pathology. AXR from last weekend shows massively gastric distension from gas with intestinal gas dilatation also. This appears to have improved with Neocate but also with management of constipation. She is on anticholinergic therapy which may be slowing down gut motility but the amitriptyline certainly did help her earlier with her abdominal pain and sleep disturbances. Plan: Continue Neocate. [ 110 ] On February 27, 2017, Dr. Leonard saw X, noting that she was gaining some weight and was staying on full tube feeding of Neocate. Dr.

Leonard’s chart notes from that date indicated “stooling better with pm golytely and change back to neocate, still intermittently distended and uncomfortable but improving. Awaiting update from GI as had visit last week…weakness. Over last couple weeks has been fatiguing easier, not able to get up from sitting.” [ 111 ] Mr. R. was off work from February 21, 2017 to March 2, 2017. He recalled they brought X to Dr. Leonard’s office as she was still losing weight and looked really sick. The parents were quite concerned. Mr. R. took a picture of X around that time showing her state of emaciation. Mr.

R. explained what was going on with the tube feeds. Dr. Leonard checked X, said it was probably a stomach bug, and was not concerned enough at that point to admit her, so they were sent back home to Fort McMurray. Mr. R. understood they were to keep trying to get as much food into X as possible, and then come back for a follow up appointment. [ 112 ] On February 28, 2017, Cheryl Harmata from Home Nutrition did a G-tube site assessment at the Stollery. X was uncooperative with the assessment, screaming and producing a few tears. X had a soft palpable abdomen.

S.R. reported difficulty increasing the fluid volume to help with bowel movements without causing abdominal distension and discomfort. [ 113 ] On March 5, 2017, S.R. sent a text to Dr. Leonard: “X going down hill last 3 days cried almost always, back down to 11.8 kg”. [ 114 ] Mr. R. testified that the parents brought X back down to Edmonton. Dr. Leonard saw X on March 6, 2017. She was concerned as X looked dehydrated and had lost weight. S.R. reported intolerance of feeds for the three days prior so S.R. was running them at half strength, but X was very lethargic and looked dehydrated. Dr.

Leonard sent X to emergency from her clinic. [ 115 ] Dr. Carroll’s letter to Dr. Leonard dated March 7, 2017 reiterated much of his letter of February 16, 2017, with slight adjustments to the conclusion: Impression: apparent food protein related intolerance. ?Motility disorder; Her suspected syndromic myopathy would place her at increased risk for GI tract motility issues (such as constip, delayed gastric emptying, transit issues) and it is possible that more complex food digestive processes may be impacting her motility regulation. This may explain why she responds better to an elemental diet.

Similarly, the tolerance of Pedialyte over Infalyte may be related to the presence of rice syrup in the latter versus dextrose alone. Rice is a notorious trigger for protein intolerance disorders such as FPIES. May be triggering motility issues akin to a pseudo obstruction type of pathology. AXR from last weekend shows massively gastric distension from gas with intestinal gas dilatation also. This appears to have improved with Neocate but also with management of constipation.

She is on anticholinergic therapy which may be slowing down gut motility but the amitriptyline certainly did help her earlier with her abdominal pain and sleep disturbances so I am not sure we want to go messing with this right now. Plan: continue Neocate and monitor weight carefully. [ 116 ] Dr. Carroll testified that “pseudo-obstruction” is another way of describing paralytic ileus, which is a condition where the bowel is slow or does not move which can cause bloating, vomiting or constipation.

[ 117 ] Dr. Leonard’s chart note from March 7, 2017 indicates: prolonged crying episode with increased abdominal pressure and granulation tissue – only 400 ml of neocate given yesterday. Currently at 40 ml/h. Mom describes significant lower abdominal distention. Home feeds: 1000-1500 ml Neocate (continuous). Was at 70 ml/h for the longest time and was even tolerating 90 but most recently she is trying to pull the feed off due to pain.

Weight yesterday - 11.9 kg Not tolerating PO bottle at night PEG and weekly go-lytely-with goal of weekly BM No emesis recently …Significant fatigue for 3 days with sleeping most days; last shunt series in Jan was fine. No viral symptoms. No interest in activities. …O/E: soft abdomen, not peritonitic, moving head/neck - not suggestive meningismus. Not complaint for exam but less forceful than her norm. Pale. 5 lb wt loss.” [ 118 ] A patient care order dated March 6, 2017 indicates X’s weight as being 12.66 kg, recorded as putting her in the 15 th percentile, diagnosis g-tube site infection.

It also indicates Amitriptyline 20 mg. March 7, 2017 [ 119 ] X was admitted to the Stollery on March 7, 2017 with lethargy, irritability and a GT site infection. A progress note from March 7, 2017 at 12:30 notes: uncooperative patient so examination was very limited. [ 120 ] Dr. Carroll saw X within a few days of her being admitted. She had lost further weight, had a superficial G-tube site infection and S.R. complained of abdominal bloating and distress. X looked malnourished and very unwell. Dr. Carroll said S.R. understood the seriousness of her condition.

X was listless and showed other signs of malnutrition. [ 121 ] There are numerous nursing and progress notes indicating that X appeared to be comfortable at certain times over her stay in the Stollery in the spring of 2017. As previously noted, the physicians who testified stated that S.R. was reporting symptoms not observed by staff. The following chronology includes a number of entries where discomfort appears to have been observed by staff. March 9 to 22, 2017 – Dr. Leonard [ 122 ] Dr.

Leonard came on service at the Stollery on March 9, 2017 and was the pediatrician primarily responsible for X until March 22, 2017. The discharge

summary signed by Dr. Foulds indicates that X was on Amitriptyline 20 mg on admission. Dr. Leonard said she would have discussed X’s medications in the team at the hospital, but she did not recall the discussions. [ 123 ] Ms. Duff said that on admission, X was fed Neocate mixed to the standard 1 cal/ml, being fed continuously [ 124 ] Dr. Leonard testified that they tried increasing the G-tube calories, but X was not tolerating this and continued to lose weight. They started her on antibiotics, but ultimately blood cultures showed no infection. Dr.

Leonard thought it was possible they put X exclusively on IV fluids for 24 hours to give her bowels a rest. [ 125 ] A progress note by Dr. Carroll on March 10, 2017 indicates: abdominal distension alone is not a reason to stop feeds and this has been communicated to S.R. [ 126 ] Dr. Leonard had been increasing X’s stool regime with higher and higher Pico-Salax and Restorlax and discussed with S.R. putting a caecostomy tube into the bowel as Dr. Leonard felt they had maxed out the constipation regimen. However, when Dr. Leonard discussed this plan with Dr. Chibuk and Dr.

Carroll, they said X should be stooling more and wanted to try a very aggressive bowel regimen of Pico Salax twice daily and Restoralax four times daily. On March 23, 2017, Dr. Leonard was at the end of her two weeks of hospital service, and stepped back to let Dr. Chibuk take over responsibility for X in the hospital. [ 127 ] In a letter to file in Exhibit 1 dated March 21, 2017, Dr. Pugh wrote that due to X’s weight loss, they did an MRI of the brain which showed smaller ventricles as compared to her previous MRI which was done before her shunt was placed. Dr.

Pugh reprogrammed the Strata II valve at 2.5 after this MRI which was the previous setting. He also wrote that nephrology felt that her unrelenting thirst was psychogenic polydipsia. Dr. Chibuk noted this in her letter report for trial, describing it in lay terms as excessive drinking likely driven by her brain. Dr. Pugh did not testify. [ 128 ] Ms. Duff said that for a couple of weeks before X was moved to her unit, X was drinking up to a 3 litres of Pedialyte/day, being 2.5 times greater than the volume needed to maintain hydration and this did not include the fluid volume from her tube feed.

The concentration of the formula was increased from 1 cal/ml to 1.2 cal/ml. [ 129 ] On March 21, 2017, X was transferred to Ms. Duff’s unit. She was on the 1.2 calorie concentration running continuously 24 hours a day and had lost weight (11.99 down from 12.25 two weeks prior). The team decided to start TPN (Total Parenteral Nutrition or IV feeding into the blood, bypassing the entire GI system). X was on TPN for two weeks and she gained some weight. This showed them how many calories X needed. Dr.

Carroll said S.R. was aware of the risks posed by TPN and was worried about X, but was also concerned that X had lost so much weight when being fed through her gut. Dr. Carroll said that X did very well on TPN. The TPN was operated solely by nursing staff. [ 130 ] Ms. Duff said that S.R. would vary the rate of feed based on X’s symptoms. Ms. Duff explained that even a continuous feed has to be stopped and started for things like bathing, dressing, etc.

The Stollery encourages parents to be involved in feeding, so S.R. was free to collect the formula from the fridge, measure it, pour it into the bag and get the tube feed running. [ 131 ] Ms. Duff’s evidence is that Dr. Carroll was in agreement to continue to tube-feed X but bypass her stomach, which was quite distended when being fed. Therefore, in addition to the TPN, which was run by a nurse, they also added a J-tube to bypass the stomach. X received 300 cal/day by TPN and Neocate through the J-tube at an increased concentration of 1.5 (1200 calories/day) for a total of 1500 cal/day. Ms.

Duff testified that she should have required a maximum of 950-1000 cal. She remarked that in July 2016, X had been thriving on fewer than 750 calories.

[ 132 ] Dr. Carroll testified that they switched to a J-tube as X appeared to have issues as reflected in the second delayed gastric emptying test, which he suspected was related to medications. The J-tube went directly to the small intestine, so the food would bypass the stomach and they could see if that was the issue. X was not gaining weight during her two weeks on the J-tube. S.R. reported that X was not tolerating the feed, as evidenced by belly pain, bloating and constipation.

They increased the feed concentration to as high as 1.5 (150kcal/kg/day), which is very concentrated and usually causes diarrhea but X continued to be constipated. Dr. Carroll testified that a high concentration will induce malabsorption, this is more likely to happen using J-tube feeding and the malabsorption would result in diarrhea. However, Dr. Carroll said diarrhea was not observed, the parents were still reporting constipation, as well as nursing staff, but some of that was based on parental reports. March 23 to April 9, 2017 – Dr. Chibuk [ 133 ] Dr.

Chibuk was the pediatrician with primary responsibility for X from March 23 to April 10, 2017. She said Dr. Leonard’s caecostomy plan did not seem congruent with what X could be doing given that she had been eating orally on discharge in July 2016. They tried to manage the constipation using PEG. X had just been on Golytely to help with bowel cleanout. X was fed Neocate through the J-tube at a higher calorie per volume version (1.5), as recommended by the dietician. Dr.

Chibuk’s evidence was that she understood that Neocate 1.5 was used as it was thought that the higher osmolarity (ability of solution to attract water) would help with X’s stooling. Dr. Chibuk said S.R. would frequently report that she would pause the feed if she was concerned X was not tolerating the feed or was distended. They planned to do a second bowel clean out using Pico-Salax and Golytely, and to increase the J-feeds after that time, using PEG. [ 134 ] Ms. Duff’s evidence is that from March 22 to 28, 2017, X was provided both TPN and J-Tube feeds.

Her oral intake of Pedialyte was limited to 700ml/day to try to control the total amount of fluid she was receiving. The Neocate Junior JT feed was at a 1.5 concentration. Together with Dr. Carroll, they decided to slowly increase the rate of Neocate 1.5 calorie J-Tube feeds to see if they could determine a maximum rate that X could handle and grow on. [ 135 ] A progress note from March 25, 2017 indicates: …review potential amitriptyline wean next Monday. [ 136 ] By March 28, 2017, X weighed 12.8 kg (up from 11.99 kg on March 21 and slightly higher than her 12.66 kg admission weight).

She was taken off TPN. [ 137 ] A progress note on March 29, 2017 indicates: patient screaming, crying, refusing exam. Another note of the same date indicates: weight overall increasing. [ 138 ] Dr. Chibuk said that once they started the J-tube feeds on March 31, 2017, S.R. indicated she felt X was uncomfortable and she was pausing feeds, and they developed a plan with a dietician for a 2 to 4 hour period that X could have “off”, with a higher caloric density for the other 20 to 22 hours. [ 139 ] Ms.

Duff’s evidence is that from March 31, 2017 through the month of April, they increased the rate of feeds of Neocate 1.5 from 45ml/hr up to 60ml/hr. Feeds were compressed to run over 20 hours a day to give X a chance to run and play for four hours without her feeding pump backpack on. S.R. expressed concern that the frequency of stools was not being accurately reported. Nursing staff reported that diapers S.R. would claim were soiled with stool had only very dilute fluid. S.R. thought they were watery stool. Ms.

Duff testified that children who cannot absorb certain nutrients have very high outputs of watery stool. [ 140 ] According to Ms. Duff, the medical team continued to limit X’s oral Pedialyte, but increased it to a maximum of 1 litre/day as X would either scream or beg for it, and it was clearly a comfort for her. [ 141 ] Nursing notes from March 31-April 1, 2017 at 2320 indicate: J-tube feed started at 21:25. Patient crying out at approximately 23:00, tube feed turned off, PRN Advil given.

Mom told same to wait 1 hr then restart jtube feed. [ 142 ] Nursing notes from April 1-2, 2017 at 2145 indicate: patient irritable and crying. As per mom’s request patient received analgesia. Patient settling and no longer crying. [ 143 ] Nursing notes from April 3, 2017 at 0955 indicate: patient irritable. Head to toe assessment completed with difficulty. Mom reports she does not think patient is feeling well at this time.

Progress notes from April 3, 2017 indicate: nutrition note: weight today=12.62 kg which is decreased from weight yesterday of 12.835 kg however overall weight gain over past 17 days is 36 g/day which is appropriate. [ 144 ] Nursing notes from April 4, 2017 at 0745 indicate: mildly irritable. Progress notes on April 4, 2017 at 0840 indicate: weight gain is okay. [ 145 ] Ms. Duff testified that around April 4, 2017, they moved to 60 ml/hr or 1700 cal/day running 20 hours/day. This was 70% higher than for other girls X’s age. [ 146 ] Dr.

Chibuk said that on April 4, 2017, X received the feed through the G-port by error and appeared to tolerate it, although the following day S.R. complained of symptoms the prior day. The GI specialist suggested increasing PEG and discontinuing Amitriptyline. [ 147 ] Nursing notes from April 5, 2017 at 0530 indicate: patient vented through GT for little gas. Abdomen semi firm. Notes from 0710 indicate: on abdomen palpation, patient said “no pain”, abdomen semi-firm at this time. Notes from 2100 indicate: patient irritable, settled with IPad and bottle.

Unable to obtain vital signs as patient fussing and uncooperative. Stomach firm, tender. Mom vented GT for some gas with some good effect, tender still. Mom stated the firm stomach has happened before, requested feed rate be lowered when restarted. [ 148 ] Nursing notes from April 6, 2017 at 1030 indicate: patient awake and crying. Analgesia provided. Patient partially settled but remains irritable and not wanting to move. Patient received analgesia. Patient remains irritable and not wanting assessment. Mom

refusing any further rate increases. Patient abdomen remains semi-firm. Mom presently walking around with patient attempting to settle her as increasingly irritable and […] bottle repeatedly. [ 149 ] Nursing notes from April 6-7, 2017 at 2100 indicate: unable to obtain vitals signs as patient non-compliant. Abdomen flat, semi-firm, no pain on palpation. Patient was inconsolable, Tylenol given, patient settled down with great effort. [ 150 ] Nursing notes from April 7, 2017 at 0830 indicate: patient irritable. Patient crying and becoming increasingly agitated with attempts at assessment.

Vitals and assessment held at present. [ 151 ] From April 6 to 11, 2017, X’s Amitriptyline dosage was 15 mg. [ 152 ] Drs. Leonard and Chibuk sat down with S.R. on Friday, April 7, 2017 before the Monday transition to Dr. Walton, and discussed a plan to manage the constipation over the weekend: to do a clean out with Golytely and PEG, and to restart the motility agent before considering surgical or other interventions and to continue oral feeds.

S.R. was concerned and did not want X to have her feeds over the weekend at the same time as the Golytely, so they placed X temporarily on TPN over the weekend. [ 153 ] Nursing notes on April 8, 2017 from 0730-1100 and 1200-1400 both indicate: patient irritable with care. Notes at 1800-1900 indicate: patient becoming increasingly irritable; screaming for bottle and Pedialyte. Notes at 2030h indicate: patient crying++ for more bottle. Patient ++irritable despite mom and writer’s best comfort measures. Patient yelling++ - moderate emesis with same.

Patient continues to scream until 0030h when she fell asleep. [ 154 ] Nursing notes from April 9, 2017 at 1700-1900 indicate: Feed held as patient up and about playing with brother. Mom settling patient back into room at 1800; feed restarted. Patient becoming more irritable by 18:40, asking for bottle. Patient becoming increasing upset, crying out for bottle of Pedialyte. April 10 to 19, 2017 – Dr. Walton [ 155 ] The TPN was stopped on April 10, 2017. X’s care was transferred to Dr. Walton on that date. Dr.

Leonard testified that X was transferred to the hospitalist team so that there was a staff physician in hospital all day to witness any episodes of discomfort. However, Dr. Walton’s report indicates that she would delegate this task to “learners”, none of whom testified. [ 156 ] Dr. Walton said she was aware of the “big picture” in terms of X’s feeding regime, body weight and Amitriptyline consumption between July 6, 2017 and April 10, 2017, but she was not directly involved during that period. Dr. Walton said she and Dr.

Chibuk would have had a lengthy conversation around April 10, 2017 regarding X’s history and the plan, the medical chart and progress notes. Dr. Chibuk did not recall if she discussed Amitriptyline with Dr. Walton on that date. Dr. Walton testified that as was the case in February 2016, there were complaints of discomfort, and the feeds were being paused. The bowel cleanout with Golytely had just finished. X did not deteriorate when Dr. Walton came on, but was not gaining weight as expected given the calories provided. Dr. Walton continued to hear about irritation being linked to feeds, but she did not see this.

They planned to go to a combination of G-tube and oral feeds around April 18, 2019, but S.R did not think this was in X’s best interests. [ 157 ] Dr. Walton did not think a stool test for malabsorption was done. Dr. Walton testified that diarrhea and constipation together do not make sense. She supposed it would be possible that carbohydrate malabsorption could occur in the absence of diarrhea. However, Dr. Carroll confirmed that both diarrhea and constipation can occur at the same time where liquid sitting above the constipation overflows. [ 158 ] Dr.

Walton was aware it had been determined on April 5, 2017 that Amitriptyline was to be discontinued. She would have ordered the change in Amitriptyline to 10 mg starting April 12, 2017. She agreed that it would have been helpful to have the pharmacists involved in X’s care. She said they typically regularly review medications with pharmacy several times a week to discuss any concerns, but she did not recall any specific discussions. [ 159 ] A progress note from April 10, 2017, which appears to be signed by

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