Daniel’s Story

In 1982, my son Daniel was born with what was thought to be a coarctation of his aortic arch.  His doctor thought that Daniel would undergo surgery around the age of four when his body was larger. However, when his blood pressure began approaching 180, it was decided that he should undergo surgery at the age of eighteen months.

On April 10, 1984, Daniel underwent surgery. During the last 1 1/2 hours of a six-hour surgery, his temperature went from 37 1/2 to 39 centigrade with a pulse ranging from 130 to 140, but he was not significantly tachycardic for a child his age. Although his cardiac surgery seemed to be successful, his condition did not improve, and it was discovered that he had an interruption of the aorta, meaning that it was not even connected.

Exactly two weeks later, he underwent a second surgery that lasted approximately seven hours. During the last 3 1/2 hours, his pulse increased from 130 to 200, while his temperature went from 37 1/2 to 41 degrees centigrade. The anesthesiologist had enough suspicion of Malignant Hyperthermia to administer Dantrium and begin cooling measures. It was also noted that Daniel developed a degree of metabolic acidosis requiring sodium bicarbonate. Immediately after surgery, the CPK was approximately 1000, and twelve hours after surgery, it was approximately 2000; 24 hours after surgery, it returned to approximately 800.

His anesthesiologist consulted with Dr. Bob Reynolds at UCLA and he agreed with the diagnosis of Malignant Hyperthermia based upon the tachycardia, rapid increase in temperature, development of metabolic acidosis, and the response to Dantrium.

Our family immediately joined MHAUS and we have been members for 32 years. Daniel has had subsequent surgeries and precautions for Malignant Hyperthermia are always taken. We have made sure that all doctors know about Malignant Hyperthermia and give them the MHAUS Hotline number. It was obvious to us that doctors and nurses were learning more information as the years went on because sometimes they would call us before we called them. I began to notice Malignant Hyperthermia crash carts that would follow Daniel through the hospital. Daniel wears a Medic-Alert necklace that states “Use precautions for Malignant Hyperthermia,” “Aortic Graft,” and “Allergic to Penicillin.”

In 1986, my husband underwent a muscle biopsy test with Dr. Reynolds and the test came back positive. Whenever my husband or three children undergo any surgery, they are always treated as being susceptible to Malignant Hyperthermia. My two other children are still awaiting a less invasive test that is covered by insurance.

Here are before and after pictures of Daniel, who will most likely need additional heart surgery in the future, but he is alive and well due to the vigilance of his doctors and the excellent care he received at Cedars-Sinai in Los Angeles.

As told by Daniel's mother,  Jody Liss-Monteleone

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