Wednesday, October 17, 2012

Patty Wessman: Congestive Heart Failure and Endocardial Fibroelastosis

My aunt Patty died in 1957 when she was seven months old. I never heard my grandmother Beverly talk about her until I was in college, 35 years after Patty's death.

I should have written her story down at the time, but as they say, our hindsights are better than our foresights, and when we're young we don't realize that people won't be around forever.

Besides the memories she shared that day, Beverly gave a short account of Patty's birth to granddaughter Eliza, who was collecting family birth stories. So here's what I've pieced together. First, from Beverly's account.
March 13, 1957, our sixth child was born. A beautiful little girl....
Patty was a good baby but I tried to nurse her and supplement the feedings. She did not get enough. She seemed hard to feed but I worked at it. At three months she had Roseola. I gave up nursing her. She gained barely enough to be within normal bounds. She wasn't thin or malnourished...

Difficulty nursing is one of the most common warning signs of a serious congenital heart defect, so this is a possible clue to the cause of Patty's death. But diagnosis of a congenital heart defect would have been difficult at the time. The only way to tell would be symptomatic (if she had a cyanotic defect, she would have had a blue or gray tinge, and that doesn't seem to be the case, since the doctors would have commented on cyanosis), or if she had any loud heart sounds (murmurs, clicks, etc.).

The tests done today to diagnose heart problems, pulse oximetry (link for the sight-impaired: Pulse Oximetry), echocardiograms, and MRIs, were not available at the time. The ultrasound technology used in echocardiograms was first used in the United States in the 1960s, pulse oximetry was not available until the 1980s, and MRIs are even more recent—the 2003 Nobel Prize in Medicine was awarded to two of the scientists who developed the technology.

When Patty was three months old, she broke out in a rash and the doctor told her mother it was roseola. At the time, the doctor may have used the term roseola to refer to a specific rash caused by one of two common viruses, but he may have used it generally to mean an otherwise non-specified viral rash ("exanthem").

Two months after the Wessmans moved to their new home at 1839 Bryan Avenue, Patty became very ill. Her sister Ann wrote:
I remember holding her part of the night Saturday/Sunday night because my mother was exhausted as she had been caring for her for some time. Patty just cried and cried. Finally I got too tired and couldn’t calm her so I took Patty in to mother and said I was too tired to keep holding her. The next day was Sunday, October 20, and mother couldn’t get hold of Dr. Feinauer (he was on the golf course). Finally in the afternoon he came, checked Patty, and said to take her to the [hospital]. Mother and Dad and Grandmother Lucile bundled her up and left. About an hour or two later they came home with her yellow blanket folded up and told us she died. There was the flu going around. She got that, but had a congenital heart problem we didn’t know about and her heart had enlarged trying to keep her alive. Her liver also to try to help the heart and was enlarged. My parents described how the doctor gave her a shot of digitalis in her heart to try to keep her alive, but nothing could save her.
Digitalis has been used for heart ailments for centuries. It helps the heart contract, and can help stabilize an irregular heartbeat. Its use in this case would be a last, desperate attempt to save Patty, and it's not surprising that it didn't work.

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Grief is not logical, and when the doctor told Beverly that she should have brought Patty in sooner, she took him at his word and thought that Patty's death was her fault.

It wasn't.

Over the years I've thought about Grandma's story from time to time and when Grandma Beverly died, I was talking to my husband, and I pictured her mother and daughter meeting her and the first thing they would say would be: "It wasn't your fault."

I will explain why. (Realize as you read my musings that I do not have medical training, just extensive practical experience.)

* * *

The practice of cardiology was entirely different in 1957 than it is today. The first real heart surgery had been done just 13 years earlier in far-off Baltimore, Maryland. LDS Hospital, where Patty died, had a heart surgeon, Dr. Ray Rumel, but anything he was able to do, even if Patty had been brought in earlier, would have been primitive, exploratory, and would have had little chance of success. The first pediatric (child) heart transplant was done ten years later at Maimonides Hospital in Brooklyn, New York, and was not successful. Even the gold standard of emergency cardiac care, CPR (cardiopulmonary resuscitation or chest compressions) was not widely known or practiced until the decade after Patty died.

After Patty died, an autopsy was done. (Does anyone know if her heart was buried with her, or if it was saved for research?) The death certificate lists the cause of death as "congestive heart failure" caused by "probably endocardial fibroelastosis."

Endocardial fibroelastosis was a catch-all diagnosis, meaning the doctors did not know the cause of the enlarged heart and heart failure. It's possible that it was due to an undiagnosed congenital heart defect, particularly given Beverly's note about feeding difficulties, but it's also likely that the case of "roseola" at three months was a virus such as measles, mumps, rubella, or parvovirus (fifth disease) which went to her heart, causing myocarditis, or an inflammation of the heart, and death.

Later examinations of "endocardial fibroelastosis" found that most of the hearts with this diagnosis contained the mumps virus.

Here is a 1966 article about death from heart failure caused by myocarditis following mumps.
"Mumps of the Heart." British Medical Journal, 1966 January 22; 1(5481): 187–188. Accessed September 16, 2012.

There is not much literature on the topic past this era since the MMR (measles-mumps-rubella) vaccine has been largely effective in wiping out worldwide cases of the three diseases. Famous microbiologist Maurice Hilleman developed many of the currently used vaccines, including the MMR vaccine in the late 1960s. Since this was a decade after Patty's death, and assuming that the enlarged heart and heart failure was caused by a viral infection or a viral infection in conjunction with a congenital heart defect, the vaccine development was too late to save her life, but Hilleman's "measles vaccine alone is estimated to prevent 1 million deaths worldwide every year." (Washington Post.)

Today, if a patient presented with myocarditis (pdf on endocarditis and myocarditis), a complete workup would be done. First, the doctor would do a physical exam, then an electrocardiogram and blood work. At some point the child would be admitted to the cardiac unit of a children's hospital where the staff would progress to a chest x-ray, echocardiogram, biopsy and start treatment using medication, heart surgery, and heart transplant if necessary.

Even today, with all the progress that has been made in the field of pediatric cardiology, it can be difficult to treat heart failure.

* * *

There are three possible lessons to learn from this story.

First, don't believe everything a doctor tells you.

Second, if a baby presents with feeding or breathing difficulties or with a blue or gray color around the mouth or nails, make sure he or she has a full medical work-up. Also, make sure every infant has a pulse-ox test before leaving the hospital after birth.

Third, make sure every child is fully vaccinated. Vaccines do sometimes have side effects, but the side effects are normally very minor and they can save a world of grief and heartache—in effect, vaccines are a blessing that was not available to many generations of parents before us.

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Please feel free to leave questions, corrections, or additional thoughts.

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Additional note: throughout this article I have used links to Wikipedia articles. Wikipedia is not a good place to find medical information. In fact, it's a lousy place to find medical information. However, the links are likely to continue to be around for some time, unlike other websites, so I continue to use them here. If you need medical information, use reputable sites like MedlinePlus.


  1. Thanks for the lovely and informative post Amy.

  2. This was so informative. I am really enjoying reading about Patty. I remember Beverly telling us Patty's story at the time of our baby's birth/passing and regret not recording it.