When Medicine No Longer Heals
and Love is All You Have
By Lee Vander Loop
In October, I wrote several articles titled “Diary of a Crisis” about a medical emergency we experienced with our daughter, Danielle. Danielle has suffered from severe spastic quadriplegia cerebral palsy since birth. She has always been non-verbal, non-ambulatory, severely neurologically impaired, and totally dependent in every aspect of care. We’ve maintained a Do-Not-Resuscitate (DNR) for Danielle for many years.
The diagnosis in October was double aspiration pneumonia and acquired pancytopenia, although we’ve now learned both diagnoses were incorrect. We were prepared to enforce the DNR with the October admission in the event that Danielle did not respond to treatment.
Pancytopenia is a diagnosis made when at least three hematology values are significantly and chronically below normal. We were told that a bacterium was attacking Danielle’s bone marrow, hampering its ability to make adequate platelets. Upon further review however, it was determined that rather than being bone marrow-related, Danielle’s pancytopenia was acquired from years of surgical interventions, medications and recurring pneumonias. Danielle responded well to the IV antibiotics and the pneumonia was resolved.
Unusual Swelling Appears
Danielle seemed to be doing relatively well for several months after that October admission, but we still had many unanswered questions. Lab results a month later showed Danielle’s platelet count was slightly improved but her red blood count was continuing to drop. We were also noticing increased swelling in her left leg, face and right hand. Her primary care physician attributed the swelling to “positional edema.” Her primary care doctor told me in November, “She’s fine, Mom,” when I expressed my continuing concerns over her still-low hematology values, the continued swelling and her stomach’s failure to tolerate even her meds, thereby forcing us to use the j-tube for all meds and feeds.
The winter proved difficult in managing Danielle’s comfort and care. Her airway became more unstable, requiring frequent suctioning and head positioning. The swelling didn’t seem to be getting any worse, but we were beginning to see a change in her stool patterns. We tested for bacteria and a parasite, but both cultures came back negative.
The first two weeks of April were extremely difficult. I suspected from Danielle’s respiratory status that she may have aspirated yet again, but with all the spring pollens out I was hopeful that her symptoms were due to the allergens in the air. I set a house rule that no windows would be opened while the pollen was flying and we would instead turn the air conditioning on as needed to keep the house comfortable.
The issues with her stools continued, as did my concerns. During the second week of April, Danielle began showing intolerance to her j-tube feedings. Danielle has always been on a feeding pump and was tolerating 60 ml (2 ounces) per hour of continuous feed. I was panicked when after running her feed for just 2 hours she became extremely nauseous and started heaving and gagging. I turned her feed off and made every effort to protect her airway from another aspiration. After multiple failed attempts to resume her normal feeding regiment over a two-day period, it was apparent there was something more going on. We took her to the hospital the morning of April 17th, and again the diagnosis was aspiration pneumonia.
I Make My Stand
Obviously, the first concern was to treat the pneumonia, so I was shocked when, with no explanation, the doctors discontinued the IV antibiotics after just 24 hours. Her respiratory issues did seem to improve slightly but she was still exhibiting an elevated heart rate, respiratory rate, and temperature.
When they suggested that they wanted to move her to the normal floor and prepare her for discharge, I made my stand. I brought the elevated vital signs and GI issues to their attention yet again. I was getting increasingly frustrated that no one seemed aware of Danielle’s base line history of hypothermia and bradycardia. It was becoming obvious to me that no one had taken the time to review Danielle’s history. I also pointed out they had not tried feeding her over the previous three days to see her response to her feedings.
To placate me, they started Danielle on a 30 ml per hour feeding regiment of a special pre-digested formula normally used with j-tube feeds. They ordered a sonogram of her liver, a fluoroscopy study of her pancreas and the traditional GI studies involving barium. I made it clear I would not take her home again without answers to my questions: why was she not tolerating her feeds; why the chronic elevated heart rate, temp and respiratory rate; why the loose stools over the past five months; why was her immune system still so compromised and her hematology values still dangerously low; and what was causing the edema which, over the course of that week, had become alarmingly worse.
My breaking point was the afternoon of April 22nd when I returned to Danielle’s hospital room and, in passing, the nurse mentioned that she had just given Danielle her insulin. Danielle had never been on insulin! I was shocked and inconsolable. I was told that one of the physicians ordered a glucose tolerance test and found Danielle’s levels were averaging between 275-600 mg/dL. I cried my eyes out in despair and dismay. Over a 24-hour period, they could not get her blood sugar levels under control despite trying different variations of insulin.
We Finally Get Answers
A year and half of pain, frustration, tears and fears and we finally had the answers. There had been mention of “chronic pancreatitis” 18 months prior when I had her in the ER for the swelling in her left leg and intolerance to anything in her stomach. At the time, no one made an issue of it. If I hadn’t inquired as to the results of the GI CAT scan that was performed with that visit, I’m sure I would never have known of her pancreatic issues. There was also mention that her liver’s production of albumin was low, but no one seemed alarmed or offered an explanation. I always insisted on copies of Danielle’s lab results and would do my own research into the anomalies. When I voiced concerns about her abnormal hematology values there was always some explanation given, but there was never alarm or a sense of urgency involved with any of my inquiries.
The afternoon of April 23rd, I had a life-altering conversation with Danielle’s attending physician. I was in the room alone with Danielle when the doctor and her resident entered. She told me tests indicated that Danielle’s pancreas was totally destroyed. It was not making the enzyme needed to help her body absorb nutrients, nor was it producing the cells needed to make insulin. This explained why she now needed insulin and why, although we were feeding Danielle 22 hours a day, she had literally been starving to death for the past 18 months and why her immune system was so compromised.
Another test showed Danielle’s liver was not making adequate amounts of the protein albumin. One function of albumin is to keep the blood from leaking through blood vessels which can cause fluid retention (edema) in the ankles, legs, lungs or abdomen. This explained Danielle’s edema and much more. My daughter was in late stage liver failure and her pancreas was gone. The physician asked me, as gently as possible, how I wanted to let my daughter die.
Taking Danielle Home for the Last Time
As if on cue, my husband and Donna, Danielle’s nurse of 25 years, entered the room. The doctor explained to them what he had just told me. We agreed that we would discontinue the insulin, take Danielle home and pray that through God’s mercy, she would pass peacefully in a diabetic coma, free of pain.
I was taking my baby girl home to die, and if God was hearing my prayers she would die in my arms. I had been prevented from holding my child when she entered this world due to the medical crisis she presented at birth. I would not be deprived of holding her in my arms when she passed from this earth and from my life.
We brought Danielle home the evening of April 24th. She went into a diabetic coma on April 27th, and remained in that coma until May 1st. At 4 p.m. that afternoon, Danielle’s respirations changed dramatically. I gathered her father, siblings and Donna at her bedside, put down the bed rail and took my child in my arms. I held my baby girl and talked to her through tears of sorrow and pain while we waited for the good Lord to come and reclaim his angel. It was the hardest hour of my life. Danielle took her last breath in my arms at 4:50 p.m.
She was finally free. Free of 27 years of pain and suffering, trapped in a body without even a voice. My baby was finally at peace. With her passing I’ve lost a large piece of my soul, but I thank God for the strength to endure that last hour, and for every moment of those 27 years that he entrusted her to me. Without ever having spoken a word in her life, my daughter taught me a level of love, perseverance, compassion and faith that surpasses anything in this mortal realm.
I would have given my life for my child to have spent one day enjoying the beauty of the world around her. I try to imagine the awe she’s now experiencing in her new body, and I pray she’s enjoying the wonders of God’s Kingdom as she dances at the Lord’s feet in Heaven.