Harriet’s Story:

“Lucky guy, you will get to rest up in Hawaii with your family.” Those were the final words my father would hear from anyone, spoken by his doctors a few days before his routine gallbladder operation. My father never left the hospital. This was the beginning of the MH nightmare for my family.

The autopsy that was performed by USC Medical stated the following: “Earl L. Smit, age 61. Cause of death: 24 hours after undergoing surgery, the patient developed an extremely rare reaction to anesthesia (halothane) called malignant hyperthermia. Note: MH, usually genetic and very difficult to detect, causes the body temperature to spike as high as 112 degrees. If the reaction is not recognized almost immediately and an antidote given, it can be fatal.” Unfortunately, there was no antidote to be given at that time. There was no MH organization to educate the medical profession.

My name is Harriet Dickstein. I want to share this story with members and benefactors of the Malignant Hyperthermia Association of the United States so everyone can protect their loved ones from a similar tragedy, like the one my family experienced. Now that I am educated about MH, thanks to MHAUS, I am proactive to protect myself, my children, and my grandchildren. Here’s an example: When my granddaughter was scheduled for minor ear surgery, I sent a faxed notice the day before the procedure to the doctor’s assistant stating that my granddaughter was MH susceptible. The night before the procedure, I was very uneasy, worrying that the nurse did not get my faxed “alert.” The surgery was scheduled for 8:00am and my granddaughter was scheduled to arrive at 6:30am for preparation. When my daughter arrived, she reminded the doctor that our granddaughter was MH susceptible. He never read the fax that I sent and, upon learning that my granddaughter was MH susceptible, cancelled the surgery. I thank God for allowing my instincts to help avoid another possible family tragedy due to MH.

Actions that you should take if you are MH susceptible:

·        Learn about MH – Become a member of MHAUS

·        Make sure all of your children and grandchildren, of your blood line, carry medical alert papers.

·        You can be tested for added protection

·        Spread the word to friends and family and encourage them to donate to MHAUS, a true life-saving organization

As written by Harriet Dickstein

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

Norah’s Story:

Our daughter, Norah 14mos, was scheduled for a g-tube (feeding tube in her belly) placement on July 17, 2015 and we were assured that it would be a quick, easy surgery. She was admitted the night before her surgery for IV sugar to prevent hypoglycemia. The night was uneventful and her surgery was first thing in the morning. We met with anesthesia and saw her surgeon. Anesthesia went over everything, including the "rare and scary" and of course said he doesn’t anticipate any of that as she has no history or family history of it. He was more concerned about going into surgery with a little lower sugar (which was my concern...ensuring her blood sugar stay stable throughout the procedure) and explained he would give her a bolus of sugar once in the OR depending on her glucose level...I signed the consents, snuggled Norah as she was given versed and then kissed my smiling baby as I handed her over to an anesthesia nurse. I waved as she smiled over that nurse's shoulder as they disappeared. I was then shown to the family waiting room, where her surgeon would come and get me in about 40-60min.

    I texted people to let them know she had been taken and her surgery would be under way within a few minutes. I walked to the local coffee shop in the hospital to get a coffee while I waited. Back to the surgery waiting room I went. I picked a chair over in the corner, furthest away from the door, settled in with my phone, magazine and coffee. A few adult ladies (sisters I learned) made small talk with me as we waited. The coffee was awful and as I would soon learn, as I sat there debating whether I had time enough to walk back and ask them to remake it, my sweet baby was fighting the fight of her little life. 

    At almost 45 minutes on the dot, the nurse practitioner working with Norah's surgeon came to the door of the waiting room. She didn’t come in. She asked me to come out. At first I thought "Wow, right on the dot, amazing!" As I got closer, I noticed the expression on her face and when she asked me to step into the tiny little room beside the waiting room, my heart sank. I knew something was wrong. I followed her into that tiny room and sat when she sat. She said "We have not even gotten surgery started; Norah developed a complication of anesthesia. When we know more, we will update you. She has a lot of people working to stabilize her; she is the priority patient in the hospital. Do you have someone you can call?" Then she rushed back to that OR where my baby was fighting to live. I couldn't breathe, I couldn't move. It felt like that tiny room was closing in on me, suffocating me. I called my mom; I couldn't get my words out. I couldn't stop crying. Back in my chair in the far corner of that big waiting room, those three ladies, strangers to me, offered words...this kind of stuff happens a lot, don't worry too much, don't work yourself up...I just nodded and cried out silently to my God. Please don't take her. Please be with her team and all of those working on her. Please, please, please, I need her.

    After another hour or so, her surgeon herself came out. She too, took me to that tiny room...where I didn't want to be. She explained to me what was going on and it was then that I first ever heard that horrifying term "Malignant Hyperthermia." She explained that Norah had a rare complication to anesthesia. She explained that they were doing everything they could for her and truly it was up to her and time. She said once they could get her stable, she would be transferred to the Pediatric Intensive Care Unit (PICU) and she would be on a ventilator which was breathing for her. She too had to get back into the OR to my sweet little girl. Social worker came, clergy came by too. I was brought to the PICU to wait for Norah. Waiting yet another hour in the sterile room they called hers, I was antsy to say the least. Finally, a PICU nurse came and started doing stuff in her room; Norah was on her way over!! I didn’t know what to expect. I did not expect 17+ people to come with her and all of these machines beeping and attached to my baby. I was physically sick. I wanted to scream and rip my baby way from all of this and go back home...to have never ever consented to this...turn back time. Wishful thinking. This was the reality...my baby had to be cooled to the core. My baby had received an abundance of the antidote, Dantrolene. She was on a machine that was breathing for her. I learned what "A lines" were as she had two of them...one in each wrist. She received another dose of Dantrolene in the PICU when her temp climbed high again. 

    The anesthesiologist handed me this little piece of paper with "www.mhaus.org" and (Malignant Hyperthermia Association of the United States) written on it. I clutched onto that piece of paper like it was the lifeline to Norah. He told me that he had called them in the OR all while helping Norah fight to live... He explained that he had never encountered MH in his career....(as I learn that is the same for everyone that learns Norah had MH...they’ve heard of it, prepare for it, but have never actually had it happen). Norah was transferred to The Medical Intensive Care Unit at Boston Children's Hospital. She stayed for about two weeks and even after going home, it took a long time for Norah to get back to her baseline...her ordeal caused to her to regress, lose motor skills she had fought hard to gain prior to this and most of all it took the longest time for that look in her eyes to leave permanently...for those big brown sparkly eyes to return and never leave. For the ghostly, gaunt look to be gone forever from my brave little fighter. For her spunky little self to be back. "Though she be but little, she is fierce...." Never again do I want to endure a day like that, or would I wish anyone else to go through a day like that...The day I almost lost my little nugget. 

I've attached a few pictures...the first two are in the PICU after the OR, before even being transferred. The second one is the little piece of paper that the anesthesiologist wrote on for me. The second to last one is a month post MH, and the last is just a few weeks ago. Norah is a miracle. She is an MH Survivor!

*UPDATE* - July 17, 2018 -"Today is our sweet Norah’s three yr live-aversary!! Thanks to the quick thinking and acting of her team that terrifying day, she’s here with us!!!"

Norah finished her first year of Preschool! 

Thank you, Lacey Anderson...Norah's mom.

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

Curt Keller

Curt's Story;

September 9, 2012--It’s Sunday morning and I am getting ready to do my ministerial duties at church. I turn on my cell phone and see a message from my daughter in-law asking for me to call her as soon as possible. When I call her back, I learn that our son, Geoffrey Keller, had a malignant hyperthermia episode from an awake trigger and might not survive. My wife, Kathy, and I got in the car and began a seven hour drive to Tennessee. However, we received the call that Geoffrey passed away about an hour into the drive. We knew nothing of awake triggers (non-surgical triggers). Twenty-three years prior to his death, Geoffrey had an MH episode while under anesthesia. We were told by the doctor that we had little to worry about because as long as we knew he had MH anesthesiologists could be ready and use non-triggering agents.

We were able to track MH on my side of the family by identifying a cousin who died in surgery due to complications in the late 60’s. He was having a jaw set that he broke playing sports. I was too young to know much of that at the time and I did not know this cousin. However, a year after Geoffrey’s MH episode in the hospital, my niece was going to have surgery to put tubes in her ears. The doctor did not believe there was MH in the family. I had to have the hospital that treated Geoffrey fax the records to the hospital where my niece was set to have surgery. After they received the records, the doctors didn’t want to do the surgery.

Six years before my son died, my father had to have heart surgery. He had an MH episode during surgery. Evidently, he had neglected to tell the doctor about MH in the family and the anesthesiologist never asked about any history. He survived the surgery, but never left the hospital. He died in the hospital a week later.

Before I go on, I want to say that I cannot say enough good things about the doctors associated with MHAUS. Men and women I had never met took the time to talk with me about Geoffrey and provided me with information and comfort after he died. I will forever be grateful to them

After Geoffrey’s death, my wife and I decided that we would do what we could to help prevent others from going through the pain we have gone through and continue to go through.

We have designed and completed several fund raisers for MHAUS and hope others will do the same. We have asked that the funds we raise go toward research and information for awake triggers. As I have learned more about awake triggers, I have learned about “awake symptoms” – issues those of us with MH can have, such as muscle cramping and heat sensitivity. (I know that “awake symptoms” is not a technical term, but I am not sure what else to call these issues.) I have been trying to do what I can to help promote further education regarding awake symptoms and awake triggers. I have also tried connecting with others who are MH susceptible. Somehow, I feel we are connected, having similar experiences that others may not understand. I will continue to do what I can, and hope anyone who is MHS will feel free to get in touch with me to share their feedback and concerns. 

As told by Curt Keller

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

Carol's Story-

My name is Carol Pitassi. Tuesday, March 7, 1961 started out like any other day for me as a little girl. I got up, got washed and dressed, and got ready to go to school. I knew that my dad was in the hospital having minor surgery that day. No one was really concerned because it was only going to be exploratory surgery for a minor problem. My mom had already undergone a much more serious surgery (open heart surgery) when I was only 8 months old. So it was my mom who was sick, not my dad. My dad was strong! He was only 43 years old! He was a carpenter/building contractor.   Little did I know that that day would be such an eventful day for my entire family; not only then, but for years thereafter.

When I came home from school that day, I had learned that my father had died during surgery, and no one was certain why. How could this be? He was not sick! My mother told my sister and me that the doctor had told her that my dad’s insides appeared to have aged faster than normal for a man of his age (I guess they were attributing his death to arteriosclerosis). I grew up believing that, and it almost cost me my own life in 1989. No one had realized that he had died because of Malignant Hyperthermia.

No one knew about malignant hyperthermia in 1961 in Rhode Island, or anywhere else in the United States for that matter. However, I learned much later that, coincidentally, it was in 1961 (the same year as my father’s death) that Dr. Michael Denborough, one of the two doctors, who described a young man in Melbourne, Australia with a fractured tibia who was more concerned about receiving general anesthesia than he was about his fractured leg. His concern was that ten of his family members had developed uncontrolled hyperthermia and death during general anesthesia with Ether.

Fast forward 28 years to the year 1989. I was married and the mother of two young children. I was about to undergo a hysterectomy operation. I was still not aware of Malignant Hyperthermia because no one….no doctor, no family member, no hospital knew about or asked the question as to whether anyone in my family had ever died while undergoing surgery.

I arrived at the hospital and was given anesthesia. My surgery was proceeding well until the nurse anesthetist noticed that there was an increase in my end-tidal CO2 and that my temperature was going up. They immediately stopped the surgery (thankfully, the event happened at the end of the surgery). They began to administer dantrolene sodium intravenously and attempted to control my body temperature. Everyone needed to work quickly and mix the solution to save my life. (It was interesting that the priest at our parish was the hospital chaplain at the time, and he said that I was certainly a celebrity at the time of my episode because all the medical personnel were talking about the event the following day). I was told later that they had to get the second half of the needed dosage of dantrolene sodium from Rhode Island Hospital, which was right next door, as the hospital where the surgery was being performed only carried half of the supply needed.

My physician left the operating room after the procedure to speak with my husband. My husband stated that the doctor told him that everything was okay at that point and that I would be okay. However, they were not going to move me as they wanted to keep me in recovery to keep watch because they believed I had an MH episode. The doctor then asked my husband if anyone in my family ever had problems with anesthesia. My husband said no, but he did tell the doctor that my father died on the operating room table when I was only 9 years old. The doctor requested that my husband get the hospital medical records as well as the autopsy records for my father.

My husband and I obtained my dad’s medical and autopsy records. We found that my dad had been given Ether and Succinylcholine during his surgery. The medical report actually stated that his heart started to act “bizarre” so they administered more Succinylcholine. Hence, in their attempt to rescue him, they actually killed him because no one was aware of Malignant Hyperthermia and the effect of Ether and Succinylcholine on an MH susceptible patient at that time. Remember, Dr. Michael Denborough and his colleague were in Australia and this was Rhode Island in 1961! They were on the other side of the world! There was no internet! No way of getting funds from the Federal Government for research on diseases that are not well known so that doctors would be informed.

Today, I have a husband and two beautiful daughters. We also have an extended family that includes my sons- in-law and our beautiful grandchildren. My daughters are keenly aware of this story and any time they have entered a hospital for any type of surgery they tell the anesthesiologist the story about their mother and their grandfather.

May my life story be helpful in spreading the word of this uncommon disorder so that lives can possibly be saved when doctors encounter an MH episode. 

As told by Carol Pitassi

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

         Nino and his family

Ernesto (Nino) Nicastro’s Story:

On May 5, 1983, when I was just 7 years old I had surgery to remove my tonsils and adenoids. Within 5 minutes of the halothane being administered, I had an MH reaction; my heart rate increased and I had muscle rigidity that developed with the use of succinylcholine. At this time, the anesthesiologist decided to stop the anesthetics and cancel the surgery. I believe that my anesthesiologist’s knowledge and education on MH and the decision to stop my surgery saved my life and I owe him a debt of gratitude.

It was at this point that I was referred to Dr. Henry Rosenberg in Philadelphia, PA. On August 2, 1983, my muscle biopsy was performed. The muscle behaved in an abnormal fashion to halothane and therefore Dr. Rosenberg derived that I was susceptible to developing Malignant Hyperthermia on exposure to triggering anesthetics. From that point forward, I have carried a card or worn a bracelet with medical alert information on it and I have been diligent in supplying my MH information to all of my current physicians.

I am now married and have a beautiful daughter, Tomasina. My wife and I are currently doing research into having our daughter tested for MH susceptibility. 

As told my Nino Nicastro

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

Michael's Story-- 

I am a 62 year old male and am MH susceptible.  I learned about MH after complications from minor surgery under general anesthesia in 1998. After the surgery, the doctor came to my room and said that I had a reaction to the anesthesia and needed to be tested for MH. He said my body locked up and he was unable to get a tube down my throat for oxygen. He checked my teeth because he thought he might have broken them while forcing in the tube. I was referred to be tested for MH and the results were positive on all three tests.

After learning the symptoms of an MH reaction, I was able to identify at least three other possible episodes. The first occurred in 1968 when I had minor surgery under general anesthesia at the age of 15. That was the worst reaction but it wasn’t documented. My body was very sore from head to toe and I had repeated bouts of coke colored urine. From all accounts, I probably should have died at that time.

The second reaction occurred in 1978 while under an inhalant anesthesia by a dentist to remove a tooth. During that episode, I experienced death and a return, commonly referred to as a near death experience. The experience goes way beyond an MH reaction but for the purpose of sharing by story, I’ll leave it at that.

The third episode occurred in 1986 when I was under anesthesia for a minor surgery and experienced coke colored urine.

After the last MH episode in 1998, I tested positive with a muscle biopsy at the Wake Forrest University in Winston Salem, NC. Thereafter, I tested positive again through genetic testing.

Since the first positive test, all of my family knows about MH and gives that information to their doctors prior to any surgery requiring anesthesia. 

As told by Michael Moon

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

My MH Experience, MH testing - Why Genetic Testing and not CHCT

The journey to finding out what happened to me on August 13, 2008 was the result of months spent gathering information.  I had just had my second child when my MH episode occurred. It was not diagnosed as MH by any medical staff at the time.  That day and subsequent days in the hospital were filled with multiple anesthesia-related mishaps and occurrences, not all having to do with MH.

An hour after I gave birth, I had minor surgery.  The plan had been to use my epidural line, but somehow blood got into the line, so they could not re-use it.  Therefore, general anesthesia was indicated, Succinylcholine was administered as the relaxant before the rest of the drugs, and my surgery was performed. Afterward, my mom tried to feed me ice chips in the recovery room.  My jaws were shut so tight I could not get my teeth apart to open my mouth.  An hour or more after my MH incident, when I was back in my hospital room but still fuzzy from the anesthesia, the CRNA came in and told us that my jaw muscles had locked up. She said it had been stressful in the operating room for a moment, but then said they had decided it wasn't “Malignant Hyperthermia” because it would have been much worse, and they were finally able to pry open my mouth just enough to shove in the breathing tube so I could breathe again. That brief mention of “Malignant Hyperthermia” by the nurse was written down by my mom. The surgery had not been halted and no post-op monitoring for MH was performed. Over the next few days, several CRNAs would pop in my room and visit me, and ask me to open my mouth.  I still could not open it very far.  They finally determined among themselves (in my hearing) that I had a small jaw and told me I needed to inform future anesthesiologists that it was difficult to intubate me.  Another “symptom” I expressed for several days was swelling near both temples.  No doctors or nurses could figure out the cause of the swelling until the baby’s pediatrician came in a day later and identified it as swelling in connection with the jaw muscles. After I got home, I had my doctor check with the surgeon about the possibility of MH. The surgeon said it could not have been MH, as the “muscle relaxant hadn’t kicked in yet” when my jaws locked up. The surgeon told my doctor the jaw joint was small so they had trouble intubating me.  I was also told it could not have been MH due to the limited muscle involvement, because MH is much worse.

After I was back home, my mom insisted I keep asking questions to try to find some answers about my jaws locking up.  Over the next few months, getting my hospital records, reading through them and trying to figure out what the notations and abbreviations meant was a fairly major effort with a newborn in tow.  Absolutely NO mention was made anywhere of the jaw muscles locking up and the difficulty intubating me, other than on the Anesthesia Record where the Difficulty scale was shown as a 2 out of 4.  I really began to wonder if I was going crazy and had just imagined the whole thing.  I saw my dentist the next month and told him I apparently had a small jaw.  My dentist said I definitely did not have a small jaw and that he was convinced I’d had some sort of allergic reaction to a medicine they’d given me.  

A few months after my MH incident, in connection with sedation before a medical procedure, I met a nurse and told her I might have an allergy to Succinylcholine, a drug that had been mentioned (abbreviated as Sux) on my hospital anesthesia record.  She then said she had a niece with Malignant Hyperthermia, that it could be deadly, and that I needed to take this seriously and pursue it further. So I renewed my efforts to try to figure out what had happened, and found MHAUS on the internet. I emailed MHAUS with the situation that had occurred during my surgery and asked if I could possibly have MH. Dr. R responded and told me that based on my jaws locking up, i.e., masseter muscle rigidity (MMR) after Succinylcholine, the possibility was greater than 50% that I had MH.

Why did I pursue genetic testing instead of CHCT?  Since I had a newborn and a three year old, the idea of having to travel from Alaska with one or both of them for the muscle biopsy was overwhelming.  We didn't have thousands of dollars to throw at a test for something I was about 50% likely to have, and my insurance would not assure me it would be paid for.  When we went for a pediatric visit three months after my episode, I mentioned my possible MH to the pediatrician, and told him that the kids might have inherited it. During his residency, the pediatrician had an MH patient die, so he was familiar with MH and suggested the idea of genetic testing. Seattle Children's Hospital had a genetics clinic up here in Anchorage every few months in 2008, so we were referred by the pediatrician for a consultation.  After that initial consultation, the Seattle Children's Hospital doctor was the referring doctor for my genetic testing.

I decided to start with the Tier One (least expensive and first level) test and am thankful my mutation (RYR1 exon 17, which has been shown to be causative for MH) was found on the first tier of genes tested.  Once my mutation was identified, the rest of the immediate family were tested for that specific mutation only, which was less expensive. Amazingly, seven out of the eight of us that were tested came back positive for the mutation.  My son was the only one who didn't test positive. I checked with Dr. R. again and was told that since we had tested positive for that mutation, even without the CHCT we could be certain that we were MH Susceptible. This final confirmation happened almost five months after my MH episode occurred.

If you pursue genetic testing, be sure you research what is needed ahead of time.  MHAUS has a list of the facilities that perform molecular genetic testing.  I recommend contacting them to know exactly what they need for the test. My suggestion is to print the information and provide it to the lab.  My sister had to have her blood drawn twice (in Kansas) because the lab staff had not done it correctly. [Note from MHAUS- A genetic counselor would be a great start to those interested in genetic testing. Click here for more information about genetic counselors.]

Even though my MH episode did not threaten my life from body-wide muscle involvement, it did interfere with insertion of my breathing tube. Over the last few years, I often experience muscle tightness in my jaws which can lead to headaches, not particularly in times of stress.  Whether or not this is a result of muscle damage from the MMR involvement from MH, I don’t know. But it makes me wonder.

In 2008, I felt like I was on my own in navigating through much of my MH Journey, and I still get emotional talking about it. I would have LOVED to have an advocate help me through it.  My hope would be that people like me (who don’t have knowledgeable docs around) would be able to find more local support through the process in the future. I learned that we are the best advocates for ourselves and for our families.  Sometimes we must keep pursuing something that we have a feeling about, even when we are told not to worry by medical professionals.  Had I not been spurred on to pursue it, someone in my family might have had a less favorable outcome from anesthesia in the future because we would not have known we were MH Susceptible.

On a positive note, my elementary aged son chose to do a Curiosity Project on MH this year, and he got to educate teachers, students and even some parents on MH.  This was a rewarding experience for us.

I believe MHAUS is a tremendous resource that is doing all it can to educate the medical community. My experience is that the medical community still has much to learn.

JB

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

     
After months of reoccurring strep throats we were advised our youngest daughter Kimberly Beth who was 7 years old would need her tonsils removed. We live in a rural community with a small hospital and chose to take her to a larger hospital in Baltimore, Maryland.

So on March 3, 1986, we took Kimberly to the hospital for what the doctor said was a simple operation and would take about 45 minutes and we could see her afterwards. About 2 hours passed when a doctor approached my husband and I and introduced himself and said there was a problem. He told us Kimberly had developed muscle rigidity and her body temperature was elevated so they stopped the operation. He also told us that he was not the attending anesthesiologist that he was passing the OR and heard the voices talking and went into the OR. He had only one other time in his 30 years as a doctor seen another case with similar body reactions and knew the operation had to stop immediately. When we were able to go and see Kimberly she was packed in ice to bring her temperature down and was being monitored. She was scared and crying, as we did not know what had happened. We had so many questions. We were able to bring her home and were told they suspected it might be Malignant Hyperthermia and take her temperature every hour. Of course not knowing what Malignant Hyperthermia was I called the next day and made an appointment with the doctor to get more information as he had offered. It took close to a year to get all the information and check into insurance coverage for the muscle biopsy; what made things worse was the fact that the test was considered experimental and the closest hospital was out of the state of Maryland.

So on May 5, 1987 at the age of 8 we took Kimberly to Hahnemann University Hospital in Philadelphia, PA for the muscle biopsy, performed by Dr. Rosenberg. When the result came back, we were advised Kimberly was positive for MH and that we should get a medical ID for her. Kimberly wears a medical ID bracelet all the time. We were very lucky the doctor was there to stop the operation and Kimberly recovered with no problems. It is so very important to meet with the anesthesiologist before any surgery to make sure they know the signs of MH and know how to handle a MH crisis as well as knowing your family medical history.

Kimberly has graduated with a BS degree, has a career in special education and lives in Westminster, Maryland with her cat Diesel. 

My husband, Howard and I know how lucky we are that our daughter survived the MH episode. Many parents and families are not as fortunate. Knowing that if it could happen to our family, it can happen to anyone.

After Kimberly’s MH episode I decided to educate myself as much as possible about Malignant Hyperthermia and become involved with MHAUS. I have been a volunteer with MHAUS for over 20 years and currently chair the Patient Liaison Committee. I feel it is so important to tell people what MH is and the questions to ask their doctors before any surgery. There are many resources now available to anyone who wants to know more about MH. MHAUS has many individuals who work tirelessly and volunteer their time to help educate and save lives. It is a privilege to work with such dedicated people.

As told by her mother, Lydia E. Friedman

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content. 

     
My son, Greg, was going in for minor surgery to put tubes in his ears and to have his adenoids removed when he was 22 months old. His father, a surgeon, explained it was a very easy procedure and I should not be anxious. Well, we all learned that any procedure involving anesthetics can never be considered easy.

Immediately following the surgery I greeted Greg in the recovery room and at once noticed and commented that he was very hot. I continuously told the nurses in the recovery room he was hot and they dismissed my input and treated me like an overprotective neurotic mother. When they placed Greg in his own hospital room, he was crying and even hotter. Again, I tried to discuss this with the nurses and, at this time it was suggested I leave the room, their belief being he would then calm down. I refused to leave, but the nurses, however, did.

Thank goodness I was a protective and aware mother because within minutes Greg became rigid and started to vomit blood. I screamed for my husband, who was right outside the room. When be came into the room he instantly knew Greg was having a Malignant Hyperthermic episode. He picked Greg up and held him under cold water in the tub, thus saving his life.

It is so important to have an advocate when going in for surgery. Be your own, if necessary, but be informed and be persistent.

A "simple" procedure nearly ended in a terrible tragedy, but my awareness and persistence, and his father's knowledge, saved his life!

Greg is now 27 years old, happily married to Courtney and President of his own Real Estate Resort Company.

As told by his mother, Marilyn

Views and opinions expressed on this page are only those of the individual telling their story. MHAUS has not clinically vetted the content.