Dear S: Re: Anne (Annie) Farlow
As I mentioned in our recent telephone conversation, we have acquired a copy of the medical records of our daughter, Annie Farlow. In the hopes of finding closure, we recently reviewed the records carefully with two acquaintances who collectively have over two decades of experience in pediatric emergency and critical care medicine. We have some questions as a result of those reviews. We would prefer if you respond in writing so that we can discuss the responses at a future meeting. It is essential to have clear answers in order for our family to bereave and recover from our beloved daughter’s death. S, we have been naive and blindly trusting in the past and in being so, we feel that we failed our daughter tremendously. We are cautious not to repeat that error.
Before Annie’s birth, May 25, 2005, cognizant of her predicted syndrome, we exhaustively researched the health and quality of life considerations that her condition implied. We had discussions with parents of children having the same disorder, and after careful thought and review of our personal beliefs, we decided to medically treat Annie with the same decision-making process that we would any of our other children. We had an open discussion about this choice with Dr. D head of genetics . We asked him outright if surgery would be denied to Annie, and he assured us that the situation would be dealt with in the same way as any child: a discussion would be held, risks and benefits given, and ultimately, the decision left to the parents. We pursued this further and met with Dr. from the bioethics department. We acquainted ourselves with the process that existed if surgery were to be required and a surgeon was ethically opposed to treating our daughter. As a result of this assurance, we were confident of the care our daughter would receive and therefore placed our trust and daughter’s life in its hands. Without the assurance, we may have chosen the palliative care option for Annie right from her birth, thereby avoiding the pain she ultimately endured (all for the hope of a future life). Depending on her needs, surgery in the United States was also an option.
On May 25, 2005, our daughter was born, and treated (mostly for hypoglycemia) for the first six weeks of her life. All the medical people involved gave her excellent and compassionate care. During this stay, on June 27, Dr. M (pulmonology) was consulted to advise on Annie’s chronic need for oxygen. Based on her hypocarbia, tachypnea, and biphasic stridor, and upon examination of her CXR, Dr. M suspected tracheal stenosis. He described a very difficult operation involving a graft, long recovery time and 50% mortality rate. Within hours of Dr. M’s consultation, Dr. C (pediatrics) and Dr. H (senior otolaryngology fellow) came to Annie’s room on separate occasions to strongly refute Dr. M’s suspicion. We therefore concluded that tracheal stenosis was unlikely.
Annie spent a few weeks at home before developing episodic respiratory distress. She was transferred on the morning of August 11, 2005 from XX Hospital by the pediatric transport team on the instructions of Dr. C, head of pediatrics. We were given a CXR taken 3 days earlier , to give to the ER physicians. Dr. J., radiologist had reported, "No areas of pneumonia are seen.... Trachea is quite narrowed.... This could be due to tracheal malacia, a vascular ring could be present." Without benefit of this CXR Dr. M had independently stated in his notes after seeing Annie just the day before (August 10, 2005) in the out patient clinic, that it should be investigated, via bronchoscopy, whether or not Annie had "tracheomalacia present or other such entities such as a vascular ring."
In the ER, Annie exhibited "prolonged expiratory wheeze", a classic symptom of tracheostenosis. After several physicians including Dr W reviewed the CXR, we were told by Dr. W, "We think her trachea looks OK, we think it's pneumonia." At this time, no new CXR was ordered; a nasal swab was ordered, but not done. Annie was transferred to the ward.
Why was the tracheal issue discounted? Is it not common practice to do a CXR on a fragile 80-day-old infant suspected of having pneumonia? Is a 3-day-old CXR showing no signs of pneumonia sufficient? Perhaps it is safer to treat a possible case of pneumonia, as it is more life threatening, but how was it determined that the trachea was not problematic?
After 1½ hours on the 7th floor, Annie suffered respiratory distress to the point of needing an RT, to bag her aggressively. I use the word aggressively because if Dianne didn't position Annie in just the right way, the oxygen saturation numbers plummeted. Dr. W arrived, and took an arterial blood sample. We all stood in silence watching D attempt to make a successful manual CPAP, which was evidently very difficult. We waited further for the blood test results (no results…blood was clotted). The records show this respiratory distress, requiring bagging, EXCEEDED one hour in duration. In addition to the obvious distress that our child endured, she also suffered a bleeding broken blister on her nose as a result. Dr. W did notexplain what was happening or what the delay was. In fact, I can't recall that he said a single word the whole time.
Is this a common practice? Is it a requirement that a child suffers through this manual resuscitation effort until blood tests return from the lab? Why was the transfer to the CCU delayed?
We were sent to the CCU. We heard Dr. P order chloral hydrate. I advised Dr. P of the warning given to us by Dr. M, anesthetist, weeks earlier during an MRI, that "nurse given sedatives would probably cause Annie to stop breathing”. Dr. P was visibly annoyed by this comment. The medication report shows that chloral hydrate was ordered and administered regardless (q8h, prn). Three and one half hours before she died, a supplemental stat dosage was given. We don't know what medication she received in the last 3½ hours of her life, because there is no medication report after the new nurse took over at 7:00am. We are certain that medication was given during this interval, but there is no record of it.
We would like to understand why chloral hydrate was used and why in the specific doses administered.
After 1 hour in the CCU (at 5:30pm), Dr. P said, "We need to have a little talk." He asked us, if our daughter were to cease breathing, should he intubate? I responded, "Of course we should intubate, we don't know what is wrong with her; we were told she has pneumonia." This response upset him greatly, and he berated me with a minute long monologue about allowing my child to die with dignity," after which, he repeated his initial question. Again, I responded quite emphatically, "Yes, you need to intubate. We needto make an informed decision about ending our child's life. We need to know what is wrong with her and whether we could or should fix it. I don't want to have any regrets. We know that she will have physical and mental challenges and we have accepted that."
If we define "discussion" as an exchange between two people involving each as a participant, then this was the last discussion we had with any physician until just before my daughter died.
Why did Dr. P write an effective DNR in the doctor’s orders at 8:00am the next day, when the only conversation preceding was that which I have described?
At one point in the very long last night of Annie’s life, Dr. P walked by, shaking his head, and while still in motion said something to the effect of; "the surgery is terrible, they need to harvest a graft and put stents into the trachea, two weeks recovery in the CCU". I would have appreciated the opportunity to discuss this further, but as he was in motion, this was difficult. I later discovered that he was referring to a reconstruction of the trachea in the case of intrinsic or congenital tracheal stenosis. However, it is possible, as was the earlier suspicion that my daughter suffered from vascular anomalies that caused secondary tracheomalacia. The surgery for this is relatively noninvasive procedure called aortopexy. The diagnosis of all tracheal disorders is made using CT scan, MRI or bronchoscopy.
Why did Dr. P lead us to believe my daughter suffered from the most severe tracheal condition? This caused us to recall the earlier conversation with Dr. M, and the very grim, high mortality surgery. Was this fair or honest? Does the hospital expect parents to make life or death decisions when precise information (bronchoscopy, MRI) to make those decisions is not provided, but is relatively easy to obtain? On what evidence did Dr. P base his comment? In the study released May 2005, (Journal of Pediatric Surgery) entitled “Recent Challenges in the management of congenital tracheal stenosis: an individualized approach,” the results differ from what Dr. P led us to believe. Can this be explained to us?
At 9:42am, Annie stopped breathing on her own, and the respiratory therapist began bagging. Our second and last discussion with Dr. P took place. Dr. W was also in attendance. Dr. P said, "Should I intubate? THIS IS NOT PNEUMONIA." I turned to Dr. W, and said, “What do you think?" He replied, "No, I guess it is not pneumonia." There seemed little hope in having our poor child suffer a minute longer as the conclusion was that she would require surgery she would be unlikely to survive. We opted not to intubate. Several weeks later, at a meeting we had with Dr. W, he said he thought our daughter did indeed have pneumonia.
Did she or did she not have pneumonia? This was critical information to our decision not to intubate.
A mother’s love for her child knows no bounds and this provides the endless energy to pursue the facts. All of this would be unnecessary had communication been clear and forthright.
Sincerely,
Barbara Farlow
Timothy Farlow