Annie's Story Part Three:  Annie's Death

Annie died at the age of 80 days.

Five days before death, she started to develop respiratory distress. It started with crying and sounded like a car trying to expel a hair ball.

The local paediatrician thought it was related to a floppy tracheal (tracheomalacia) because the x-ray that was done revealed a trachea that was so narrow it could hardly be seen.

The respiratory distress worsened.

Annie's Face turns, and stays red

We went to the outpatient clinic at the Children's Hospital to see our primary paediatrician. By this time, we had come to know him well. We trusted his integrity and competency completely.

He thought that we should "wait and see". I reminded him that we wanted to consider whatever treatment Annie might need including surgery and he said he understood. There was no talk about providing comfort care or a suggestion of pursuing a palliative plan.

That night, the respiratory attack was so terrible that we went to the ER of the regional hospital. Annie was transferred immediately to the Children's Hospital for tracheal assessment.

Our primary paediatrician, the ER doctor and the Intensive Care doctor (Intensivist) looked at the x-ray. Our paediatrician returned to say, "Annie's trachea is fine, we think it is pneumonia." I said, "well that's good news. We will give her antibiotics and she will get better, right?".

A few hours later, Annie suffered such terrible respiratory distress that the respiratory therapist needed to start bagging Annie. This is when they squeeze a bag to keep pressurized oxygen in the airways. When this happens, the hospital has a standard of transferring children to the Critical Care within 15 minutes. I am told that staff come running to help the patient. It is called a "code blue."

We waited and waited. We just stood there with the respiratory therapist for the longest time, watching Annie's oxygen saturation numbers going down to the 40's and up to the 80's. We thought she was going to die. Our primary doctor came in , took a blood test, and left. He said nothing. We later discovered from the medical records that the critical care dept was called over one hour from the time went into distress.

Finally, we were transferred to the Critical Care. The intensivist asked us soon after if he should intubate Annie if she stopped breathing. (This is when they put a tube down the trachea and a machine breathes for the patient) I said "Yes, we  were told Annie had pneumonia. We need to know what is wrong. We know that Annie will have disabilities but her life has value and meaning to us and we need to make an informed decision so yes, you will have to intubate".

The intensivist turned and left the room in an abrupt manner. I asked the nurse, "What did I say wrong?" She was shocked and said, "I don't know, I would want to know if it was my child."

Annie lived for 16 hours in the Critical Care. At one point through the very long night, when my husband was alone with Annie, the intensivist commented on his evident fatigue. He asked if Annie made a turn for the worse, and there was nothing that could be done for her did he want her to suffer? What would any parent say?

When I was alone beside Annie, the intensivist walked by with his arms crossed, and literally while in motion described a severe case of the surgery that the Pulmonologist had suspected many weeks ago. He used words like "Insert stents, harvest, two weeks intubation time of recovery". He was shaking his head as he walked.

I thought that this was the worst news ever. Annie had been agitated and restless all night and the nurse kept emphasizing how uncomfortable she was. We spent hours dipping a pacifier into sugar water for her to suck on.

Intense fatigue and watching someone suffer is a very terrible combination. Remembering that night is so very painful.

At 7:30am rounds, the intensivist told my husband that they were planning tests for later that day.

At 9:30am my husband was alone and to his shock noticed that the oxygen saturation numbers were plummeting. Our 1:1 nurse was nowhere to be seen. He turned to the other 3 nurses in the four-bed room and said, "The numbers are dropping!!" But nobody came to help.

He ran down the hall looking for Annie's nurse and when he found him, the nurse said, "Are you sure you want to resuscitate?" My husband said, "Of course, my wife is not here".

I arrived from down the hall minutes later and they were bagging Annie once again. Both the intensivist and our Primary Paediatrician were there. The intensivist said, "Should we intubate? This is not pneumonia."

Well, this meant that Annie needed the surgery that he described. I turned to our trusted primary doctor, the one who knew us best. I put my arm around his waist as an expression of a desperate need to know the correct answer to a question and decision that we would live with for the rest of our lives. I said, "what do you think?" He said, "I guess it is not pneumonia".

There was really no choice. Annie's suffering over the previous 3 days but particularly during the final 24 hour hospital admission had been unbearable. We were so tired and we had to make a decision fast, as she was being resuscitated. The thought of putting her through a surgery which was worse than open heart surgery and which she would not likely survive, given her fragility, was too much. We said no to the option of intubation.

A chaplain came by and said prayers over Annie. The primary physician stayed with us for most of the time. I remembered  all of the stories I had read about babies with Annie's condition dying. (Most are so affected that they die when they are young) I remembered words like "groaning, moaning and gasping". I told the nurse not to let Annie suffer. She died a short time later.

The events of this night still play in my mind like a movie. Every word spoken, every expression, Annie's suffering. A parent never forgets.

Part 4 Annie's Story: Discovery