Derek’s Story….

I still remember that Friday morning in April 2018, when I took Derek, my 9-year-old son, to the hospital for a simple surgery. The surgery did not even require for him to stay over night in the hospital, so he had made plans at home for the weekend as part of his short recovery period.

However, when the surgery was almost over, something very unusual happened. One of the doctors later told me that it was the first time in their lives that they encountered such a situation, in which they got some odd CO2 readings and a skyrocketing temperature. Fortunately, the anesthesiologist in the room remembered his MH crisis training, so he immediately informed the lead surgeon of what was happening, so that he could immediately conclude the surgery.
This marked the beginning of a frantic race to find dantrolene sodium, as it is not marketed in Peru. Derek was covered with ice in an attempt to lower his temperature. An urgent message was sent to all the anesthesiologist community in Lima, and to our good fortune, Dr. Maritza Santos knew there was some dantrolene stock in the Operation Smile Peru warehouse. Dr. Santos has been working for several years on creating MH awareness in Peru and Operation Smile is an international NGO that organizes free surgeries to kids with cleft lip/palate. All Operation Smile missions require dantrolene sodium as well as other important medical supplies to ensure the safety of their patients.

Time was of the essence, so an ambulance was used to bring the dantrolene from the Operation Smile Peru warehouse to the hospital. The level of stress we all faced that morning was unimaginable. It was a never-ending wait until the medicine finally arrived, and it was immediately administered to Derek.

Derek stayed for five days in the hospital’s pediatric ICU, initially with a reserved forecast, but he recovered very well. He even faced a second MH episode the day after the surgery, but it was successfully controlled because he was already getting his dantrolene. Throughout all this process, Dr. Santos monitored his evolution and was in constant communication with the MH hotline in the U.S. I believe that Derek’s guardian angel was extremely busy in those days, but at the end, he formidably fulfilled his duty.
Thanks to Derek’s experience, my family got some genetic testing done and successfully identified the specific gene mutation that caused his MH and tracked it down my mother’s family tree. So far, his sister, my mother, and I have tested positive for the same gene mutation as well. Now, my whole family is aware, and we take special care for any programmed surgery. We even learned that about 40 years ago, an aunt of my mother did not make it through a surgery and passed away. It is very likely that she had an MH episode.

Even though Derek’s MH triggering agent was different, we are also very interested in learning more about MH triggered by heat or intense physical exercise. We also hope that dantrolene becomes available in my country and that it should be mandatory for all hospitals to have it. This has become a family objective with Dr. Santos always supporting us.

As told by Derek's mother, Macarena

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