"Only those who love and care have the right to judge quality of life. To our family, Annie was perfect."
-Barbara Farlow
TORONTO, June 19, 2008 (LifeSiteNews.com) - It has been more than two years since Annie Mary Farlow was born with Trisomy 13, the 3rd or 4th most common chromosomal anomaly in North America. Many Trisomy 13 children die during their first week of age; most do not survive childhood; and only a small percentage reach their teenage years.
Annie's story is not that different from the other countless stories of children with genetic illnesses. She was loved by her family. She died very young - eighty days after her birth - and when she died, her family was devastated. Her death was premature, hastened by doctors who made a series of unilateral decisions without regard to her parents' consent. It is a story that plays out every day, all over the world. The first and second parts are always told. But the third part rarely is.
That is the difference between Annie and so many others with the same condition - Annie's story is being told.
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On Wednesday, June 11, Annie's mother, Barbara Farlow of Mississauga, Ontario, delivered the First Annual Sue MacRae Lecture on Ethics and Patient-Centered Care to a crowd of about 80 listeners in downtown Toronto. There, Mrs. Farlow related the circumstances surrounding her daughter's life and death - a story, she reflected, "that should have been simple."
At the beginning of her lecture, Mrs. Farlow reflected on how much the public image of the physician has changed in the last three or four decades. She described the family doctor of her childhood, the kindly, bespectacled, wise old man with the big black medical bag, the man you knew you could trust with any secret you wouldn't tell anyone else. "In my family," Barbara recalled, "the stories of times of medical crisis were always told and retold, and regardless of the outcome, the doctor was the hero, who either saved the family member, or otherwise made a valiant attempt, and then shared compassionately with the family in the sad outcome. I could never have imagined that a doctor would refute, withhold, or provide misinformation to a family."
Mrs. Farlow's daughter Annie was born to a loving family of seven older siblings. The whole family was determined to love her and celebrate every day of her life for as long as she was with them, whether her life would be measured in weeks, months or years.
"In preparation for Annie's birth . . . we spent a lot of time thinking about 'quality of life'," recalled Mrs. Farlow. "We looked at the situation through the lens tinted with our family's values, and Annie's life had meaning and worth. We made the decision to consider medical treatment or possible surgery only if it was in Annie's best interest. We did not want our daughter to suffer unnecessarily."
Mrs. Farlow said that she and her husband met with staff members from three separate departments at the Toronto area children's hospital where Annie was to be born. They were assured that Annie would not be treated differently because of her condition, but would have the same rights as any child.
"Specifically, [we were told that] if surgery was required, it would be discussed with respect to its risks versus benefits, and the ultimate decision would be ours.
"The bioethicist took notes of our meetings. She wrote: 'Calm, articulate, logical, framed in best interest logic. Want to give baby every opportunity for quality of life-though realistic-don't want life of suffering.' As we left the bioethicist's office, she told us that she didn't think we would have any problem, because we believed that the doctors had Annie's best interest in mind. I said, 'Of course they do.'"
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Annie was born full-term, May 25, 2005, after an easy labor. She was a healthy seven pounds, with normal vision and hearing. Best of all, she did not have the severe heart deformity that had been foretold by three prenatal echoes. For a little girl with trisomy 13, her prognosis looked excellent.
Annie was kept in the hospital six weeks for observation, and to treat hypoglycaemia and mild pulmonary edema. Annie's parents remained at her side day and night: her dad took the night shift and her mom the day shift. The children waited anxiously for their baby sister to come home. The boys took over the yard work completely; the girls purchased stimulating music and ordered a "Bumbo seat" that would aid Annie's muscular development.
During those six long weeks in the hospital, for the most part the Farlows enjoyed an excellent relationship with the hospital staff. All of Annie's nurses were supportive and compassionate. However, the first unsettling event occurred during their stay in the hospital, though it was only in hindsight that the Farlows realized how strange it was. For one week, their daughter's primary physician went on holiday, and a visiting physician oversaw Annie's care. That doctor, concerned about Annie's breathing patterns and volatile oxygen saturation numbers, ordered a consultation with a pulmonologist (lung specialist). The Farlows recount what followed on their website, http://www.anniefarlow.com:
"The pulmonologist told us that he feared that Annie had a rare and fatal condition with her trachea called tracheostenosis. He said there was a surgery for it but it was very horrible with a high mortality rate for children who were not fragile like Annie.
"We would not choose to undertake a surgery with such a bleak prognosis. Our thoughts over the next hour focused on how our baby would die from this. How would we provide comfort care for a slow death that could best be described as a gradual suffocation?
"Within hours, two physicians arrived at separate times to soundly refute the suspicions. One of them said, 'We are allowed to disagree you know, and I disagree.' Well, this was good news! Our trusted primary physician returned and he was not too concerned about the suspicion but said he'd keep an eye on it.
"Annie came home at last."
The Farlows' summer progressed, and they continued to be hopeful for their daughter. Mr. Farlow took an indefinite leave from work, and the family buckled down for what they were sure would be a challenging year, but also one which they were determined to enjoy to the fullest. Family and friends were deeply supportive. Annie's brothers and sisters doted on her, but somehow, "homework got done and soccer meetings were made." Annie grew chubby. On day 77, in a game of peek-a-boo, Annie smiled for the first and only time in her life. "As veteran parents, we certainly knew a genuine smile. It would be her first and last, for Annie would only live three more days."
Shortly after that first smile, Annie developed episodic respiratory distress, and her face became permanently flushed. A local paediatrician thought the flushed face might be a side effect of medication. The Farlows took their baby to the outpatient clinic at the children's hospital. There, their primary paediatrician decided they should take a "wait and see approach."
"We reminded him that we wanted to consider whatever treatment Annie might need to get better. We trusted him and respected him completely, and never thought to question the fact that no tests were ordered. To question him would have been to question his competency and integrity, and we had no reason to question either."
That night, Annie suffered a respiratory attack the Farlows could not help her through. She was rushed from the local to the children's hospital, specifically for tracheal assessment. There, the primary, emergency and critical care physicians together reviewed Annie's X-ray. "We think Annie's trachea is okay, we think she has pneumonia," they told her parents. The Farlows were relieved; antibiotics would most likely be able to help their baby get better.
Annie was sent to the ward. Within a short time, however, she suffered respiratory distress to the point of needing a respiratory therapist to begin bagging (providing artificial respiration). "The primary physician entered to take a blood test and then left. We stood there in silence alone with a respiratory therapist while she bagged Annie...we thought Annie was going to die. We resisted the urge to shout, where did everybody go? Somebody help! …The primary physician returned, stood in silence for a minute, and then left. Finally the blood tests came back and a call was made to intensive care."
The records show that the duration of manual resuscitation was 1.5 hours. The Farlows later learned that the hospital's policy limited manual resuscitation to 15 minutes before transfer to the ICU.
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In critical care, the intensivist preached to the Farlows about dying with dignity, "but provided absolutely no medical information." He asked if they wanted Annie to be intubated if she stopped breathing. Mrs. Farlow responded yes. She said she and her husband did not want Annie to live on breathing machines, but that "we needed to make an informed decision about what was wrong and whether we could or should fix it." The intensivist said nothing, but left the room "in a manner that indicated he was not pleased." Later, he walked by the room, and as he walked, without pausing to let them respond, he graphically described to Annie's parents the tracheal surgery that had been mentioned to them weeks earlier, when Annie was diagnosed, and then undiagnosed, with tracheal stenosis.
At this point, the Farlows still had been told nothing except that their daughter was suffering from a case of infant pneumonia; they were becoming more confused by the minute. Why was the intensivist upset that they would not permit him to let her die if she stopped breathing? Why did he so rudely and graphically describe that operation?
In the morning, when he was alone, Mr. Farlow noticed that Annie's saturation numbers were dangerously low. No alarm sounded: the alarms had been silenced. Annie's nurse was nowhere in sight and none of the other nurses in the four-bed room came to his aid. Mr. Farlow ran down the hall, screaming for help.
"The nurse appeared and asked if he was sure he wanted to resuscitate Annie. The response was, of course we do." Minutes later, Barbara Farlow returned to Annie's bedside to find Annie being manually resuscitated, with the intensivist and the primary paediatrician bedside. The intensivist again asked the Farlows if they wanted him to intubate Annie, telling them that Annie did not have pneumonia. Up to that point, neither he nor any other physician had told the Farlows that. Annie's parents turned in shock to their paediatrician, and Mrs. Farlow put her arm around him in an attitude of pleading for his honest opinion. "This would be the most important decision my husband and I would make in our lives, and we needed to trust him to guide us to make the right decision."
The paediatrician said that it appeared that it was not pneumonia.
"We were exhausted. We could not think clearly, we had to make a decision fast, and the advice of both doctors was apparent." They could not bear to see their infant daughter suffer anymore. They knew that her health was fragile, and could not imagine her surviving an operation, whatever her actual diagnosis might be. They allowed her to be removed from the monitors. Annie was placed in her parents' arms, and died soon afterward, at the age of eighty days.
Part II of Annie's story will appear in tomorrow's LifeSiteNews.