About   |   Print Page   |   Contact Us   |   Sign In   |   Become a Member of MHAUS
Community Search

Prepare for Upcoming Surgery

Find us on Social Media

Faces of MH
Group HomeGroup Home Blog Home Group Blogs
Views and opinions expressed on this page are that of the individual telling their story and not from MHAUS. Click Group Home to get back to Faces of MH.


Search all posts for:   


Top tags: Barbara Matulionis  Beth Luedke  Carol Pitassi  Carrie Baldwin  Cheryl Mercer  Daniel  Doug Davison  Ernesto Nicastro  Geoffrey Keller  Geoffrey's mother  greg glassman  Harriet Dickstein  Harvest Anne  Jonathan  Julie Bailey  Karen  Karen Irving  Kate Thompson  Kathleen Keller  kimberly shike  Lacey Anderson  Maverick Longoria  Michael Moon  Natalie Bruce  non-anesthesia related MH  Patrick Welch  Richard Masanz  Robert Olson  Ruth Ann Bruce  Steve Rattray 

Vincent Groetzner

Posted By Administration, Sunday, July 13, 2014

My name is Lisa Groetzner, also known as "Vincent’s Mom”. It is ironic how in some ways we lose our identity when we become a mom, yet in other ways we grow into a new and better person because of that blessing. Let me share our story with you. I’m here today because Vincent has given his family and siblings a gift, the gift of his life.

If you are familiar with Malignant Hyperthermia, you are probably thinking right now that Vincent had undergone some kind of surgical procedure and reacted to the anesthesia. Well, that is not the case. As we learn more about Malignant Hyperthermia, we are uncovering that MH is not just about inhaled anesthetics. Vincent died in less than two (2) hours from a Fatal Awake MH Episode just 2 weeks before his 7th birthday, and we have yet to understand what triggered this in him.

On June 14th, I left for work before the kids were even awake. We had just had a fun weekend after school ended on June 10th and the boys were excited about the summer fun ahead. I had scheduled a vacation day for June 15th so we could all go to the beach to "kick off the summer” with close friends of ours and their children. There was nothing that could prepare me for what was about to happen in our lives as I drove home from work that day.

I arrived home at approximately 4:15. The kids had a quiet day in the house with Vincent & Dominic enjoying their time together now that school was done. As I settled in and the boys told me about their day, Vincent mentioned to me that he still had a headache. I instinctively reached over and felt his forehead. He felt fine, and I kissed his cheek and asked if he needed Tylenol to make it better. He said no, that he was fine. I asked him if he remembered to wear his glasses today, because over the weekend he hadn’t and he had started with the headache the day before. Then my neighbor called wanting to know if Vincent wanted to come over and play with her son and play in the splash pool since it was still so hot out, and when I asked Vincent if he wanted to, he was jumping up and down on the bed, saying, yes, yes, yes, with excitement. I remember thinking the headache mustn’t be that bad then.

Our nanny left at 4:45 to drop Vincent off right down the street at the neighbor’s house and everything was fine, nothing out of the ordinary was noted. It seemed like barely 20 minutes went by and I saw my neighbor through the window coming to the door with Vincent and her son. I opened the door and asked what was wrong. She said she wasn’t sure, but Vincent said he couldn’t bend his legs. I looked at Vincent and reached out to help him in, and he said, "Momma I don’t know what’s going on, but I can’t bend my legs and my heart feels like it’s going to pound out of my chest.” I feel his chest, his heart is racing and he is HOT, very HOT. He’s asking for water, I take him into the bathroom to get him into a cold shower to try to cool him down. I get some ice packs, but they are hard ones and they are difficult to work with. It’s approximately 5:30.

I’m getting him water, thinking he shouldn’t drink too fast. Recalling now that my husband said Vincent drank water too fast this morning and threw it up. We think nothing of it, because he’s done this before and seems to have a sensitive stomach. He can barely hold the cup. The shower isn’t cooling him enough, I don’t have enough ice for an ice bath, and I don’t think I should submerge him since his heart is racing. I dry him off and get him to the front room and sit him down and he’s asking for more water, I get him more water, I run out to the car to get it started, crank the air, and put the front passenger seat down in a reclined position. I ask the neighbor to stay with the kids and that I need to get Vincent to hospital now … I feel like I wasted precious minutes and I don’t think I should wait for 911. My mind races, the rest of the kids would be traumatized to see EMS Personnel come in and start working on Vincent.

As I carry Vincent out and put him in the front seat and put cold wash clothes on his forehead, and ice packs by his neck and under arms, he’s asking me why I’m putting him the front seat? He is totally coherent, as he has been the entire time. As we are driving to the hospital he’s complaining that the sun is in his eyes (we are driving towards the sun). I’m telling him not to worry about that, close your eyes, concentrate on your breathing (he’s breathing shallow), and I’m trying to get him to take deep breaths in and exhale out all the way. He’s telling me the ice packs fell off when I made a turn. So many things happening at once. During all this time I have called the pediatrician, my husband, my nanny (to come back and help with the other kids). I had my husband call the ER/hospital ahead to let them know we were coming. People are not moving out of the way on the road, I can’t get around them. I’m honking my horn and flashing my lights and people are too oblivious to think that there is a hospital less than a mile down the road and this is an emergency. Vincent starts trying to tell me he can’t open his mouth. He’s sounding scared now and I look over and see he’s talking through clenched teeth. This is worse than I ever imagined and he has been so brave this whole time. I am loaded with adrenaline and my mission is to get to the hospital. I go in the wrong way, and miss the turn to get right in front of the ER door, I swing around the parking lot and get in front of the door. I tell Vincent, we’re here, we’re at the hospital and I’m going to get you help and see what’s going on. You’re going to be okay. Vincent tells me, "Momma you’re going to have to carry me.” Of course, I’ll carry you sweetheart. Momma has you.

I carry him, yelling HELLO, I NEED SOME HELP HERE! No time to triage … they take him from me and we’re heading down the hall. I tell them everything, from the fact that he was fine, not sick, nothing, to coming home without being able to bend his legs, etc. They whisk him away. It’s approximately 6:00 p.m.

You know when they send a pastor to sit with you it’s bad. Code Blue … I can see them trying to resuscitate my sweet boy, my first-born amazing little boy. I’m praying to God that if it’s true that you don’t give us anything more than we can handle, that everything has to be okay, because you know I can’t handle losing him. The doctor comes in and tells me he thinks Vincent is septic, his fever is upwards of 108 (they can only measure up to 108). He thinks it is meningitis. I tell him everything again, I say no way, he was fine, he was coherent when we pulled up in front of the hospital. If someone has a fever like that, he wouldn’t be coherent, he’d be delirious. He asks me if anyone is coming to be with me. I tell him my husband is on the way. He tells me Vincent has been flat-lined for too long and even if they can get him back, he would be severely brain damaged from the temperature being so high. My brilliant, talented boy is gone, This is every mother’s worst nightmare … to lose her child … it’s unfathomable.

My husband arrives and they discontinue resuscitation efforts and call his death at 7:14. I laid in the bed holding my dear sweet Vincent for what seemed like an eternity, stroking his hair and his cheek, kissing his head.

The following weeks are torture. I go over in my mind every detail, anything I could have missed, anything that could have contributed. The Health Department has contacted everyone since the ME’s office has ruled out anything contagious. What took the life of my precious son? After many conversations with the Medical Examiner, Dr. Wendy Lavezzi, trying to determine the cause, we discussed everything leading up to his death, everything he could have been in contact with, his past medical history, etc. After 6 torturous weeks, Dr. Lavezzi called me to tell me she was ready to "un-pend” the death certificate. The cause of death was Malignant Hyperthermia due to an underlying undiagnosed muscular disease. I have never heard of Malignant Hyperthermia, but my head is spinning because I had searched for years for a reason for Vincent’s posture, I had brought him to so many doctors and specialists, they had put him through so many tests, only to be told again and again, that they didn’t know why he had an exaggerated arched back, that they never detected any muscle weakness, and that eventually they would suggest a muscle biopsy.

After contacting the Malignant Hyperthermia Association of the United States, and after long discussions with Dr. Barbara Brandom and Dr. Henry Rosenberg, they put me in contact with the right people and the genetic lab up at UPMC, I authorized Dr. Lavezzi to send Vincent’s tissue sample and blood to the lab to see if we could confirm this diagnosis. After more torturous waiting, it was confirmed that Vincent had a variance in the RYRI gene. Now the rest of us had to be tested, and it was confirmed that my husband and 2 of my other children have this same variance. Now to determine what the underlying muscular disease is. My husband undergoes a muscle biopsy at Children’s National in D.C. and the research team takes some muscle to perform the Caffeine/Halothane Muscle Contracture Test as well. MH positive. More weeks of waiting for results of muscle biopsy … classic cores indicative of Central Core Disease ….

Without the devastating loss of Vincent’s precious life, we probably would have never learned that my husband, my 6 year old son Dominic, and my 3 year old daughter Avelina, all have Central Core Disease, which makes them highly susceptible to Malignant Hyperthermia. My 1 ½ year old daughter Alessia, whom I lovingly refer to as "my happy little accident” does not have Central Core Disease. The irony amazes me.

So as you can see from what I have described to you, MH is not just about anesthesia. I have been following Dr. Henry Rosenberg’s blog, President of MHAUS, and he describes proposed future classifications for MH. As the research continues and new discoveries come to light, it is my hope that the education and training of medical professionals expands. It is obvious that the ER was not prepared for an "awake” MH episode. Even with the symptoms I provided the staff, their differential diagnoses did not include the possibility of anything other than infection. When the anesthesiologist in the ER administered succynylcholine to intubate Vincent, if he/she was advised of the muscle rigidity Vincent was experiencing when he came home and the subsequent symptoms of tachycardia, hyperkalemia, increased CO2, etc, perhaps a connection could have been made. If there was any chance of saving Vincent, that chance was lost once they administered succinylcholine.

Over the past year the Dr. Paul Banerjee, Medical Director of Lake/Sumter EMS, Dr. Wendy Lavezzi, District 5 Medical Examiner, and myself have talked at staff meetings at the local hospitals, all of the EMT staff in Lake/Sumter counties, and UCF Nursing Program students. Shortly after we spoke to the EMTs, there was a case where an individual underwent outpatient surgery and went home. Many hours later that person started to develop muscle cramping and a fever. 911 was called. The EMT recognized the symptoms, inquired about history, and promptly started cooling measures and got the patient to the hospital. On arrival, the EMT advised the ER staff that the patient was most likely having an MH reaction and to treat with Dantrolene. They reacted with disbelief and history was provided. This patient was saved.

It is my hope that in Vincent’s name we can continue to raise awareness regarding MH among emergency medical professionals and help to establish protocols for EMTs and ER staff. If there’s a fever, it doesn’t necessarily mean there is an infection. There should be a range of differential diagnoses. One should never become complacent in their medical training.

As to by his mother Lisa Avallone-Groetzner

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

Tags:  non-anesthesia related MH  vincent groetzner 

Share |
PermalinkComments (0)
Sign In


 [Image:  Join MHAUS today - become a member]