Read Others' Stories
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Blake: Illinois, Survivor
My name is Blake Schuchardt, and my story began in March of 2005 when I was 18 and a senior in high school. I was your average basketball playing teenage boy who only thought about sports and girls. I never really was very sick and when I did get sick, it was only a cold here or there.
So one day at school I started feeling like I was getting sick: stopped up nose, fever and weakness. I went home and decided to stay home the next day from school. Throughout the night I didn’t sleep very well. I kept tossing and turning and something just didn’t feel right. I didn’t realize it at the time, but I was not really able to move my neck or turn my head without moving my entire body to do so.
I woke up around 10am and felt horrible. I figured if I took a hot bath maybe I would feel better, so I managed to make it to the bathroom and turn the water on in the tub, but I could barely stand up due to weakness. My feet hurt, but it’s hard to describe because I had never felt it before. I didn’t realize that my Dad had stayed home that day because he just knew something wasn’t right with me. He was downstairs in our basement when he heard me turn the water on in the tub. By that time I had barely made it back to my bed. I didn’t even have the energy to lie down; I just fell onto my bed like a bag of rocks.
My Dad came into my room and found me lying on my bed covered in purple blotches all over my body from head to toe. He decided to take me to the ER, but I wasn’t even able to dress myself so he put some clothes on me and took me to the car and raced to the hospital. There the doctor decided that I had a case of the flu and treated me for it. As I lay in the hospital bed, all of the purple blotches began to burn as if someone was burning me with cigarettes. That’s the best way I can describe it.
My family doctor was contacted and ordered me to the nearest major hospital. The ER doctor thought I was stable enough to be transported by car, so my Mom and Dad had to take me 2 1/2 hours to Vanderbilt Hospital in Nashville. Once we arrived, the last thing I remember was sitting in a wheelchair asking my Dad if I could lie down. My Dad was standing behind me so I laid my head on his stomach.
The next thing I remember, I woke up a week later in a bed covered with lines and a breathing tube down my throat. I was so disoriented I was under the impression we were in the hospital for another family member. The following information is actually what my parents and family told me after the fact.
Once we arrived at the hospital that night I passed out and was taken to CCU where I was intubated. The nurses were unable to find my pulse and my blood pressure was nonexistent. The doctors told my family there was a 0% chance I would make it to the morning and to begin calling my family so they could come say their goodbyes. I surprised the doctors and made it a couple days in that condition until they finally gave me a 20% chance of making it.
I was started on dialysis, and a spinal tap was done confirming I had Bacterial Meningitis. My legs, feet, toes, hands and ears all turned black and the doctors were certain I would have to have them all amputated. I was in the hospital for 3 ½ weeks before I was stable enough to be released to my home. I managed to make it out of the hospital with all of my extremities intact. And those purple blotches now looked like 3rd degree burns all over my body. Over time I did have to have 3 tips of my toes amputated due to no blood flow. I started Physical therapy because I hadn’t walked in almost a month. It took several months before I could actually walk on my own. I was able to go to prom and even gave the opening prayer at my high school graduation.
I was on dialysis for a year and a half before I received a kidney transplant in October of 2006. I used all of this experience to make something of this life that someone was finished with yet. I attended college and obtained an Associate’s degree in science. Then I attended Nursing school where I received my Associate Degree in Registered Nursing. Now I am 26, married with a brand new baby girl (4 months old) and I currently work as a Home Therapies Dialysis Nurse teaching people how to do dialysis in their homes. I want to show those who are currently going through Meningitis or dialysis that their life is not over and they can do anything they put their minds to.
Karen: California, Survivor
I never thought that going out with my friends on dinner adventures or working 40 hours a week as a registered nurse would somehow get me to almost lose my life. On December 9,2011 I was diagnosed with a severe form of bacterial meningitis called meningococcemia. Initially, I had flu like symptoms so I didn't think it was anything serious. I tried to get some rest and sleep it off, but something or someone, told me to stay awake.
Then all of a sudden I couldn’t urinate despite drinking a lot of fluids and my bladder feeling full. I couldn't feel my feet because they were suddenly extremely cold and numb. I stumbled as I walked and I became anxious and short of breathe within minutes. By the time I was in the ER I was unable to walk completely. The doctors and nurses couldn't even take my blood pressure because it was too low. At this point all my major organs were failing rapidly. The doctors were insisting my mom call the rest of my family because they didn't think I was going to make it. I was transferred to the ICU right away. According to the doctors, If I stayed at home 30 minutes more and fell asleep I would have died due to multi organ failure. I survived two heart attacks, a blood clot in my brain, kidney failure, and respiratory failure to name a few.
For 15 days I was in a medically induced coma while my body continued to deteriorate. I woke up Christmas Eve thinking it was the next day only sleeping 8 hours. The bacteria kept on spreading throughout my body causing blood clots to my extremities. This eventually made my limbs gangrenous in color because of lack of oxygen. I had a tattoo on my ankle that wasn't even visible anymore because of the dark gangrene color. I was not able to talk for the first three months due to a tube helping me breathe lodged in my throat. Ventilators and other machines were helping me stay alive. I had dialysis machines attached to me because of my inability to produce urine. A feeding tube helped me eat, but it never provided the satisfaction of food in my stomach.
For 3 months I was unable to eat or drink through my mouth. Making my needs known was nearly impossible as well as very frustrating. There were so many times that I just wanted to give up. I had to spell on a board by pointing to the letters in order to communicate my needs and tell whether or not I was in pain, which was almost all the time. The pain I went through was unbelievable which made me highly tolerant after a while. Being poked with needles and having nerve pain was a daily routine. To make it worse I didn't have a voice so I couldn't scream or express my feelings. I woke up every single day terrified not knowing how much pain I would have, what the day would be like, or even if I would survive. The hardest part about being a patient is having the knowledge of a nurse. Realizing what kind of complications can arise and what the procedures were was frightening. Besides being physically uncomfortable, I found myself always psyching myself out thinking the worst possible scenario which was torture. I underwent over 20 surgeries during my 5 month stay in the ICU and every single time I feared for my life. I still have at least a few more surgeries to undergo.
Due to this debilitating illness, I suffered a great loss to my quality of life which is something we all take for granted. I lost all four limbs to this horrible bacteria. Physically and emotionally I was in a lot of pain. Autografts (skin grafts from my own body) were placed all over other parts of my body which made me feel hot due to the lack of natural pores for perspiration. My body feels like it's 100 degrees all the time. The bacteria also affected my face and grafts were placed on my cheek. Due to this bacteria I physically lost my nose, top lip, my hair, some of my hearing in both ears, and part of my ear which through time grew back on its own. Mentally, I lost so much more. Reconstructive surgery plays a big part in my life now and has helped me stay optimistic. I always believed and trusted God in my life, but now more than ever. Everything happens for a reason and I believe God gave me this challenge because He knows I can handle it. I have been discharged home from the hospital and I am resting at home trying to heal. With the support of my family and friends I have been able to stay positive and not dwell in the past. It's miracle I'm alive and I am very grateful because I do believe I am here on earth for a reason which is to inspire.
Paisley: Texas, 12 days old
Paisley was born in January of 2011, as a healthy and strong baby girl, and the fourth child of our family. She developed cold-like symptoms when she was only 12 days old.
But she did not have a cold. She had an aggressive case of bacterial meningitis. Until that day in early February, meningitis was simply a word to me, one of those diseases that I had heard about but that only afflicts other people in other places. Within a short hour\'s span, it changed for me into one of the most haunting words that I have known.
Meningitis can act so quickly, since the infections are often very advanced before the condition is identified. It can rapidly lead to hearing loss, blindness, severe mental impairment, amputations, and death. Milk-white drops of fluid from her spinal tap revealed that the infection was already advanced by the time we arrived at the emergency room. The doctors told us that her infection was bacterial, far more serious than the milder viral meningitis.
Today Paisley is a year old. Her twelve days are now twelve months. By God's grace, she is as perfect and whole as our other children have been. She is so well, so healthy, and so strong, that it is difficult to grasp the outcome that could have been - how close she came to a very different future. Friends of ours have been less fortunate.
It was our pediatrician's nurse that first advised us to immediately go to the hospital with Paisley, and pressed us not to delay based upon what we thought of as unremarkable symptoms. The doctors at the hospital took the strongest actions possible, assuming the worst case scenario and treating for meningitis before the tests had been processed. Their proactive playbook and prioritization of her case made a difference, in a struggle where lost time can mean irreversible repercussions.
Within minutes of our arrival at the hospital, friends appeared to sit with us and to pray with us. Word spread rapidly through our church, our friends, and our family. Within hours there were scores praying. Within two days, there were hundreds: spread across the US, South America, Asia, and Europe.
With the coming of her first birthday, I cannot escape reflecting upon what has happened and how thankful we continue to be. I look at what so many people did to save one little life. These are things that do not wash off; they are indelible to a parent's heart. When Paisley smiles, when she bounces to music, when her eyes glow in the soft light of our Christmas tree, I remember.
Joe, Meningococcal Meningitis Survivor, New York
On July 11, 2011, feeling nothing worse than a bad cold, I became ill with meningococcal infection and eventually fell victim to septic shock, and nearly died.
For me, the journey began on a Thursday - June 24, 2011 - in Albany, when I underwent a significant amount of dental work. What was intended to be a protracted procedure scheduled over several weeks was instead accomplished by two different dentists in approximately two hours.
Two days later, a process which seemed to cause me no problems in the short run was now the source of great pain.
By Saturday night, the pain became excruciating, and on Sunday morning, I called the dentist for direction on what to do next, and he prescribed an antibiotic. By this time, I was alternating fever and chills. I spent the next four or five hours passed out, and when I awoke, I had an abscess the size of a Chiclet on the roof of my mouth.
On Monday morning, June 28, I awoke, feeling well enough to go to work, though the Chiclet remained. I kept in contact with the dentist office receptionists, conveying my concern and discomfort from the abscess, but was told not to worry.
On Sunday, July 3, I left on a weeklong work trip to San Francisco and Berkeley, the bump still very much prominent, and I had to learn to speak and eat around it.
I felt fine all week – well, nearly so, just some sniffles but nothing to be concerned about, and I had full days of face-to-face interviews followed by restful nights of adequate sleep.
I left the Bay Area on Sunday afternoon, July 10, arriving in Albany 1:30 a.m. Monday morning. I went to bed feeling like I definitely had a cold, but nothing like the agony of two weeks prior.
That morning – Monday, July 11 – 17 days after the initial dental work – I awoke with a much worse "cold”. I had planned to work from home, but found myself able only to check my email and prepare to leave for the endodontist for an 11 a.m. check-up. I thought nothing of driving myself to the dentist, but remember nothing of the visit, or of the drive home, except that I had to stop on the way; I couldn't make the 10 to 12 minute drive through city streets - and I didn't find that unusual.
Obviously, I wasn't clear-thinking or I would have realized that anyone unable to attend to such a small task must be really sick. I went home, threw myself on the bed of my second story Albany bedroom, and fell asleep for the next seven hours.
My mother, who lives in Utica, had apparently been trying to reach me by telephone all day, and when I didn't answer, she sensed something was wrong. She tried unsuccessfully to reach my neighbors, and eventually reached a friend who shared her concern - and premonition - and drove the 25-30 minutes to my house to check on me.
The door to the house was locked, but the car was parked in front, indicating I was home, so he repeatedly called up to my bedroom window until miraculously, I awakened and –remarkably- walked down a flight of stairs to let him in and then walked back up again to return to my bed. I was totally exhausted, and apparently, he was confident that I needed immediate help. My friend insisted, thankfully, on calling the EMTs, who took me to a nearby hospital.
I might have waited longer except my friend called my primary doctor, also a friend, who in turn called the ER and insisted that a doctor see me immediately.
That changed everything, or so I'm told. Upon close observation, it was clear that I was in severe sepsis, and my body was experiencing septic shock – a severe drop in blood pressure.
Now, Doctors and IVs were flying everywhere, and my friend was told that he should "notify the family immediately," as I might not last the night. I was on life support.
At first, the doctors didn't know what kind of infection they were fighting, but it turned out it was a bacterial meningococcal infection - Neisseria meningitidis.
In the next few hours and days, lungs, kidneys, liver, heart - everything - failed.
Eight days later, I showed signs of a chance of survival. I was brought into consciousness. The ventilator tube was removed, and I started my climb back to life, spared the amputations, the blindness and all the other things that usually accompany this experience.
I spent 19 days in the Critical Care Unit, was discharged directly home, and started down the road to my recovery. In three months, I was back to working; lethargic, but working.
It's been 21 months since the incident, and I've more or less returned to my normal state. I know this is not the norm, and I am very grateful. I hope to demonstrate my gratitude and appreciation by educating people on sepsis.
Ashley Mason, had meningitis as 7 year old
My name is Ashley Mason, and when I was just seven years old, I had Meningitis. I was living in Anderson, California, at the time. I was in second grade, going to school at Meadow Lane Elementary. One day at school I was sent home, due to a high temperature of 105. My mom took me to the emergency room, where the doctors simply said I had the flu and sent me home. I still had my fever, and when I woke up, wanting to lay with my mom, she told me to get up and walk to her, but I was too weak. She came and picked me up to lay with her. She looked me over to make sure I was okay, and that's when she saw these marks all over me that looked a lot like bruises. She rushed me back to the emergency room, and the doctor on duty took me from my mother's arms amd started working on me immediately. He knew exactly what I had. I was put into a drug enduced coma, because I was so small my body was in shock. I was then life flighted to UC Davis Hospital in Sacramento, California.
Shortly after that, I was transferred to Shriners Hospital for Children, where I spent three months learning to walk amd deal with my new condition. I lost four toes on my left foot along with half of my heel. I also had a below the knee amputation on my right leg. I have skin grafts coving my legs, arms and entire back. From then until now, I have still been having surgeries to fix my leg so I can walk without any pain. Just two years ago, I had a twelve hour surgery on my leg, during which a muscle was taken from my back to add more cushion on my leg, so it would be more comfortable to walk. Not only does it still hurt more than ever, at this moment it's too difficult to walk, too much pain for me to handle. I also have back problems due to the surgery to fix my leg. I am in constant pain and am almost 20 years old. I got sick almost thirteen years ago, and I'm still trying to figure out how to deal with the effects of Meningitis.
Jodi, who lost her son, Jeff, age 29
On Sunday, February 19, 2012, Jeff, a healthy 29 year old, had been in Charleston for the weekend and had felt a little tired, but disregarded it. Monday, 02/20/12 he called me at lunchtime to tell me he had a fever, his head and back were hurting and he felt like he had the flu. He went home from work at 2pm. I went to his house to check on him at 5:30-6pm. When I first arrived, he was warm to the touch, but the thermometer kept reading 98 degrees. After a while, I finally took his temperature from under his arm and it was 102.5 degrees. So I took him to an urgent care. The diagnosis at the urgent care was the flu, so he was sent home with meds at around 7pm. His major complaint continued to be his extreme headache, a backache and his fever. We both went to bed about 11pm.
At 3am I heard him fall into the bathroom cabinet and he had fallen off of the toilet. He seemed like someone would if they were intoxicated and were somewhat incoherent. He had bloodshot eyes and it was necessary for me to assist him to the car. This time I was taking him to the hospital ER. When we arrived at the ER at 4am, he wondered off, confused, after I signed him in. The ER desk clerk seemed to think he was intoxicated. He was immediately sent to triage. They took his vitals and once again his temperature didn't read in his mouth. When his temp was taken under his arm it was 103 degrees. The triage nurse called for a room immediately. The medical staff started work immediately and he started declining from that moment on. IV's, a catheter, etc... On his eyelids there were pin-prick like spots that appeared (looked kind of like a blue felt tipped marker had been dotted on his eyelids) - 6am. All fluid from blood and a spinal tap were clear at this time. He started to become non-responsive, or unable to answer simple questions during this time. At 6:30am they told me my son was very sick and they were moving him to critical care. His platelets were 22 and the doctors were very concerned. I would be able to visit him later. He was put on a ventilator. At 7:30am they advised me his kidneys had failed and it was time for kidney dialysis. The doctor told me at this time that Jeff had been resuscitated earlier and I could see him later (after the dialysis). Throughout the day they would give me updates, and they told me that Jeff was the most sick person in critical care, in the smallest room with the most equipment. Also throughout the day, I was being called back to answer questions because they still couldn't figure out what was wrong with him. At 12am Jeff's platelets had gone up to 25 and the doctor said they wanted to scope Jeff's stomach and there was a very small window of time to take this opportunity. The diagnosis had suddenly changed to sepsis from meningitis. The scope showed that everything was OK, but there was one organ that had to be sustained by machine, but I can't remember which organ (getting medical records tomorrow). At 4am, they told us that he had some bleeding on the brain and the neurologist would be in between 6-8am and they may want to try to drain the blood from his brain. However, at about 9:30am, they advised me he was brain dead and asked if we wanted to remove the life support. At which time we said yes. The final diagnosis was meningitis.
None of the other young men that traveled with Jeff to Charleston got sick.
Hopefully, my son's story will help someone else in some way. If you have any questions or require additional information, please do not hesitate to contact me at the phone number or address below. Or email me! Thanks for your concern and all you are doing with your foundation to help others.
Nicole, who lost her brother, Michael, age 19
Michael was 19 and a senior in high school when he contracted meningococcal disease. He was battling a bit of a cold for a few weeks, nothing serious. Unlike most guys, he was pretty stoic about being sick. He'd just take medicine and go about his day. He was an exceptionally hard worker for a teenager, and he prided himself in his work. He was taking Japanese classes at a local community college, and he had a trip planned to go to Japan over the summer. He worked as an usher in movie theater. He went on a hike the day before he died. He was a healthy, active young man.
On April 1, 2005 my parents got a phone call from the school nurse saying that Michael had the flu. He went home and laid on the couch for a few hours. He said his head hurt, but it was not unusual for Mikey to get migraines, so they thought little of it.
As the evening progressed, Michael's condition worsened. My parents took him to the emergency room. He was still presenting flu-like symptoms with a splitting headache, but something about it just didn't seem right. He'd had the flu before, and he'd had migraines before, but never like this.
After a long wait in the emergency room, they finally saw him. They couldn't find anything wrong except that they couldn't register a temperature on him. They were preparing to discharge him when things became much worse. He blacked out. They tried to do a spinal tap, but he needed help so they gave it up and just worked on him. They worked on him for well over an hour. A medical helicopter was on the way to take him to a hospital with better facilities. He was gone before it got there. He died of sepsis early in the morning on April 2, 2005.
I still have nightmares about the flight from D.C. (where I was living) to Ohio, and then seeing my parents, the horror, the grief, the surreal way it all felt, until I laid eyes on his lifeless body. I can still feel the scream in my throat, seeing my brother there in a box...it was right after April Fools day, and we had always had such a fun time playing pranks on each other. I just kept sobbing..."its not funny Mikey, its not funny..."
It makes me so angry to think that it could have been prevented by something as simple as a stick in the arm.
Brett, 15, meningitis survivor
I consider my son Brett's battle of meningitis to be one that needs to be shared due to the ups and downs and the mystery of its course. If telling Brett's story can convince at least one person to be vaccinated against this illness, than I will feel like I accomplished my goal.
On Brett's 15th birthday last April, he came down with a headache. Since he spent the night with several buddies, I didn't really have any real worries about it and gave him some Motrin. The next morning he wanted to stay home from school, saying he just didn't feel good. I again gave him more Motrin and left for work, telling him to call me if he needed me. By mid-morning Brett texted me, telling me he felt even worse. I called my Mom, and asked her to bring him up to have the pediatrician I worked for take a look at him. When I went and told my boss he was coming, I told her I really didn't think it was anything other than the flu. When Brett got in to see Dr. Doshi, I heard the description "it feels like a bomb going off in my head." Brett clearly had a stiff neck at this point. Dr. Doshi sent us to the emergency room, telling me we needed to get this investigated.
Upon arriving to the emergency room, the ER Doctor wasn't sure what to think, since Brett wasn't presenting with the classic high fever of meningitis. In fact, he had no fever at all. He did tell us that a virus they were commonly seeing did cause the neck glands to swell, mimicking meningitis, but they hadn't had one test positive yet. None the less, a spinal tap was ordered.
"Your son has meningitis." Those words from the Doctor came as a complete shock a few hours later. I always thought meningitis was swift and deadly so I felt panic set in. But we were assured it was of a viral origin, as the bacterial slides came back negative. It was explained that he could fully recover at home in 7-10 days. We did take Brett home and counted our blessings that he had only the viral form.
The next morning, Brett got drastically worse. He was unable to walk a straight line, and told me everything was spinning. I immediately took him back up to Dr. Doshi, where she admitted him to the closest hospital. She was concerned that he was dehydrated and that an overnight stay in the hospital being pumped with fluids should help. But it didn't. As that first night went on, Brett still kept getting worse. In the middle of the night he needed to go to the bathroom and almost fell getting in there. Brett was a good six foot tall and only days before had pitched at his team's baseball game, leading them to victory. It was hard to believe he was so weak so soon.
As the next morning set in, it became obvious Brett was only getting worse. After conferring with several doctors, it became evident that Brett needed the care of a bigger hospital and was transferred via ambulance an hour away to a children's hospital. The first few days Brett seemed to stabilize, although with that being said, he was very weak and unable to get out of bed. He also had not eaten anything solid in almost a week. After no improvement in the five days since being transferred, the doctor ordered another spinal tap in hopes of getting answers. It was Easter Sunday of all days, and Brett was wheeled into a room where his second spinal tap was performed.
As the week went on, Brett was still confined to bed and not eating. All we could do was to sit in a dark, quiet room while he slept. The only sounds were the occasional beeps of the monitors. The latest testing showed no real answers. After being there for eight days, Brett woke up on and was having double vision. When I tried to talk to him his eyes were unable to focus on me. It was then a rash began appearing, as well as his vitals were now setting off the alarms like sirens. We had a flurry of activity from intern teams, to infectious disease teams, up to the director of nursing in our room staring at my son and the monitors. No one could give me any answers as to why this drastic turn of events was taking place, and no one seemed to know what to do about it, accept rush him in to the ICU unit, since up until that point, he had been on the regular pediatric floor. Within an hour of being there a third spinal tap was performed, as well as Brett being rushed down for an MRI of his brain, the second one in less than a week. The only concern at that time was that one of the slides picked up a bacterial contaminant, but further testing could only rule it as inconclusive. The next morning Brett got even worse. By evening he began to hallucinate, taking several people to hold him down. After a few hours of hallucinating, he became silent, and stopped responding at all. The Critical Care Doctor was called in around two in the morning, and he ordered an emergency CT scan of the brain. He was concerned that Brett would not follow commands such as squeezing fingers or felt no stimuli when picking up his neck. In fact, when the Doctor did pick up Brett's neck, he looked like a limp rag doll!
"Your son has the onset of encephalitis, or swelling of the brain". The results of the middle of the night testing showed Brett's brain was beginning to swell. Yet, despite of having his blood drawn around the clock, countless doctor consults and testing, no one could explain why the turn of events. It was like battling the unknown. After all, one is supposed to get better in the hospital, not worse! The next morning the decision was made to insert a PICC line above Brett's heart and start antibiotic therapy. It was shortly after that decision that Brett started to make a gradual improvement throughout the course of the day. The next day Brett had his fourth spinal tap as well as yet another MRI of his brain. Once the antibiotics were started, Brett was showing improvement on the latest rounds of testing. Over the next couple of days, Brett emerged again. He was very weak, but up and talking. He was able to eat small bites. He needed physical therapy to help him build up his strength to do the simple things like walk or even hold a fork, but he was improving.
After 4 MRIs of the brain, 4 spinal taps, 3 CT scans of the brain, a 25 pounds weight loss, 15 days in the hospital that included six in the ICU and being transferred by ambulance from one hospital to another, Brett came home. He spent an additional four weeks at home recovering, and it took most of the summer for his strength to fully come back. Next month will not only mark a year since Brett fell ill, but also his 16th birthday, which he can now celebrate fully recovered.
I can't say enough how important it is to get the vaccine. Brett's meningitis was labeled as viral because the bacterial agent could never be identified. I have been told that the fact Brett got the vaccine may have masked the agent and that's possibly why it never could be proven how or where it came from. The one thing I have been told, and I stand by, is that the vaccine he had a year prior saved his life. As with any vaccine, one may still get the illness, just a milder form. Although Brett's illness was very severe, it was very mild compared to what I think of what could be. Brett may not be here.
Lindsay, lost 16 year old son
My son Tyler was a very healthy, strong and athletic young man who never drank or did drugs of any kind. In fact, we always joked that Ty was sort of super human because he never got sick and he was very strong. When someone in the house got the flu or a cold, Ty never got it. He was very careful about what he put in his body. He was a high performance athlete who played hockey and lacrosse at a very high level and just completed his first year of Junior hockey and was being recruited to play at Division I schools for both sports. What happened in July of 2011 completely changed our world forever.
On the morning of July 6, 2011 my son Tyler woke up (11:00am) not feeling well. He complained of a stomachache. I took his temperature, it was 100.1. I told him to take some Advil and lay low for a while which he did. At approximately 3:00pm I took his temperature again to find that it had gone down a little to 99.4. He took a few more Advil and went in his room and went to sleep. He woke up at approximately 7:15pm and said he was a little hungry. I felt this was certainly a good sign so I brought him some peanut butter crackers and some water, which he ate right away. He laid back down but I noticed that he felt very warm. I took his temperature again to find that it had spiked to 104.7. I got him up and we went to the hospital immediately. He had no other symptoms other than the fever so I really didn't know what was going on. The hospital is 5 minutes from our house. Upon arriving at the Hospital I was told he may just be dehydrated or he may have the flu. Within a few hours Ty started to develop a very small rash, probably the size of a pinhead purplish in color. He also was having hard time breathing. The doctors worst fear was that Ty had contracted Meningitis. The Doctors asked me if Ty had been vaccinated and he was at age 11. It was now around midnight approximately 4 hours after bringing Ty to the Hospital that the Doctors decided to transfer him to a nearby Hospital better equipped to treat what they thought Ty was fighting. Upon arriving at the Hospital the new Doctor treating Ty came out and told us that we had a very sick son and he was going to do everything possible to save him but we must be prepared, your son is probably not going to survive. This is the worst thing a parent can hear. At 4:41am July 7, 2011 approximately 17 hours after Ty woke up not feeling well, he went to be with the Lord. In the days that followed it was determined that Ty had contracted Meningococcal disease. My daughter lost her big brother and best friend. I too lost the best friend I ever had.
Clare, lost 3 year old twin son
It has taken me several weeks to pull myself together, to sit down and take a breath. I don't imagine this will ever get easier or hurt any less. But I have to tell this story and hope that because of it, one less child will die from meningitis, meningococcemia, or any meningococcal disease.
I have always thought this saying to be true, "An ounce of prevention is worth a pound of cure." Therefore, on the one-month anniversary of Phoenix's death, the time has come to tell his story.
Phoenix is my beautiful, intelligent and amazing son. I want every parent to know that he was a precious child who was loved, cherished and cared for by his parents and his twin brother. In just a few days, I went from being a happy mother of two playful little boys to a grief-stricken mother trying to find meaning in such a tragic death. On the morning of February 9, 2012 ,Phoenix woke with a mild fever. He played with his brother, ate his breakfast, and then played some more. After eating lunch he laid down for his nap and around 2:00 P.M. woke up with vomiting and with diarrhea. Being the mother of twins, I am used to having both boys sick at the same time, so I thought it was a bit odd that Gryphon showed no signs of being sick at all. After getting Phoenix all cleaned up and settled down, I decided to check his temperature again. When I saw that it was now 104 degrees, I strapped him in the car and headed to the emergency room. As we arrived at the ER, I noticed a small spot on his arm. I couldn't linger on this thought because things started moving pretty fast with the doctors and nurses checking his vital signs and asking me a lot of questions. I couldn't keep my eyes off of Phoenix. I started to realize he was now acting very strange; it was like he was hallucinating. He seemed at peace and started to sing to me.
Nobody, not even the doctor, recognized his symptoms. The hospital staff had decided to just keep an eye on him and monitor his temperature. Phoenix asked me to take him to the bathroom, and while he was sitting on the toilet, he kept losing his balance and falling off. Immediately I knew something was wrong, so I started screaming for help. Several nurses came into the room, and at this time, the doctor decided to do a spinal tap. Even though it is such a painful procedure, my precious Phoenix didn't move at all.
The doctor and staff called for the helicopter to transport him to Oakland Children's Hospital. In the meantime, the results came back positive for meningitis. When my husband came into the room, Phoenix's face lit up and he asked his baba for milk and cookies. He appeared to be responsive and cheerful and started to sing E-I-E-I-O. The anesthesiologist suggested we put him under to help eliminate any pain that he may be feeling. That was the last time we heard his sweet voice.
When the helicopter arrived, I demanded to be transported with him. As we were walking out to get in, the hospital chaplain walked with me. We stopped to pray for a miracle. It was at that moment I knew my baby was dying.
After a 50 minute helicopter ride, we arrived at the hospital. While they were getting him out, I could see that his tiny body was covered in purple splotches called petechiae; his legs, his arms, and his torso .Phoenix was raced to the ICU. Coming into the room, I could see at least four doctors and ten nurses scrubbed in and ready to go. I was asked by the head nurse to stay in the waiting room and was told they would brief me on his condition. Those were the longest two hours of my life. When she came back and told me Phoenix was the sickest boy in that hospital, I felt sick to my stomach. My husband had not yet made it to the hospital, so I stood there alone and in shock, trying to make sense of all that I was being told. As soon as my husband arrived with Phoenix's twin brother, Gryphon, we were taken straight into the ER to make sure that Gryphon didn't have the same thing as Phoenix. The decision was made to keep Gryphon under observation for the night until we could get a better grasp on what was happening with our baby son. The nurses came in periodically and updated us on Phoenix's condition. I couldn't bear being separated from either one of my boys.
I was so worn down that I couldn't possibly process all the information that was being given to me. At times, I didn't understand it, or maybe I simply didn't want to believe it. I cuddled up to Gryphon and tried to fall asleep with him. Around 2:00 A.M. Gryphon started laughing in his sleep, sat up, hugged the air, and said, "I love you." Little did I know that, at around the same time, Phoenix's heart had stopped for 15 minutes. I didn't know it then, but I know now that Phoenix had come to say goodbye to Gryphon. For the next three days, machines kept Phoenix's little body alive. Then, we received the most devastating news we hoped never to hear: "Your son, at this moment, is the sickest boy in the whole world." Phoenix was hooked up to countless IVs, lines, and machines, at least 15, going into his little body at one time. They also had him on an ECMO machine that was inserted into his arteries to help oxygenate the blood. He was so unstable to move that they could not do a CT scan on his brain because his heart had stopped, and his temperature had reached 106 degrees. They held off until Sunday evening to do the CT scans. From Friday to Sunday evening, we heard from the doctors, "Your son possibly has severe brain damage due to his high fevers, he has pneumonia, looks like we will have to amputate some toes and fingers, looks like we will have to amputate all four limbs." It was shocking and horrible; it was hell. On Sunday evening, they were finally able to move him and did a CT scan. The scan confirmed there was no brain activity. Monday came, and the neurologist confirmed that he was, in fact, brain dead. Throughout this extremely long weekend, the chaplain of the hospital stayed close with us. Sister Breanice was an absolute saint, and through her words and kindness helped Bart and I become at peace with where Phoenix was about to go. She was right there as we watched the surgeon take the ECMO out of his body, and she was right there as Bart and I held his little hands and watched his strong heart slowly die. Our baby was pronounced dead around 1:00 P.M. on Monday, February 13.
Please pardon my anger and sadness when I express how devastating it was to read the article regarding Phoenix in the local newspapers, a simply put story regarding a nameless three year old who had contracted the meningococcal disease. There was no follow up to his condition, no call to action for parents to talk to their healthcare professionals, not even a note on what symptoms parents should look for in their own children. No one knows where Phoenix contracted this disease. What I know, after doing my own research, is that this disease is only carried by humans and is passed along in close contact situations: crowded areas, high schools, dormitories and even preschools! I also know that this disease has a high fatality rate in children and adolescents, and many who are lucky enough to survive usually don't escape its devastation without the loss of a limb, some form of brain damage, hearing loss, or kidney failure . As a mother, I don't understand how something like this can happen. That "something" being that any child in the United States could die from a disease that currently can be prevented by a vaccine. That is right: there are vaccines that help prevent the spread of disease and pointless deaths.
I am sure many of you have heard of polio, measles, mumps, and rubella, and how our society has done its best to eradicate these dangerous diseases. Every child that is born is required to get vaccinated at some point, and I am a parent who says, "That is great!" Why should our children die from a disease that can be prevented? How often do we hear of an outbreak of polio? Not often, or really ever. Thanks to vaccines.
I understand that there are many families who choose not to vaccinate. I respect your right to choose. However, I do vaccinate my children and expect to be given all of the necessary information to make an informed decision. Herein lies the problem: I was never made aware of the vaccinations available for meningitis. It is hard to believe that we currently have vaccines which protect against types A,C,Y and W135. One of the vaccines is approved for use in children as young as nine months of age. There are five different strains of bacteria that can cause meningococcal disease, and we can currently vaccinate against four of the five. The vaccine is offered to teenagers, college students, military personnel and other selected groups. Although this disease is known to have a high mortality rate in young children, for some reason, this is the age group not offered the vaccine.
I am lost. No, I am more than lost. I am angry and saddened that this disease can take the life a child, and no one seems to care. Why aren't the younger children protected with a vaccine recommendation? Without any kind of public outcry, pleas of parents who have lost their most valuable treasures are going unheard. Our government needs to help protect our children and change the way our medical system works. Something has to be done but won't be until we raise our voices loud enough to be heard. I didn't want to be an advocate. I would much rather be holding my precious son in my arms, watching him play with his brother, tucking him in at night. I have to say that without the love and support from our friends and family, I am not sure my husband and I would have gotten through this. So, I must ask you, from one parent to another: wasn't Phoenix's life worth that ounce of prevention.
Katie, Vermont, lost her 2 year old brother
Losing your sibling is an experience that impacts your life forever. I know this because I live with it every day. On May 20,1997 my little brother Justin died from Bacterial Meningitis. I was 4 and he was 2. We were on our first family vacation to Atlanta, Georgia, to visit my aunt.I remember my brother getting sick and my parents bringing him to the doctor. When they got back, they told us he had a cold but he would be ok. Then I remember waking up in the night to the paramedics and police officer in my aunt's house. They took Justin to the hospital and my parents left with him. I was so scared, that I ran and hid in my aunt's room.
In the morning my aunt took me to the hospital. I was admitted and checked for Meningitis. All I wanted to do was see my brother, but I couldn't because he was very sick. I never did get the chance to see him before he died, and I never got to say good bye. I was very sad and confused. I didn't understand what was happening to my family. I became an only child. Where was my brother? I was too young to truly understand the reality of it all.
As time went by and I got older, I started to ask a lot of questions about Justin's death. My parents were great. They explained it all to me. They told me he had gotten Bacterial Meningitis, but the doctor at the clinic didn't know this the night before he was taken to the hospital. My parents found this out when they got to the hospital. They explained how contagious this was and that that was why I was admitted and treated, and why they were brought next door to an adult hospital to be tested and treated. They explained that the reason why they didn't let me say good bye to him was because he was bleeding internally, and it would have been too hard for me to see him. They didn't want me to have to live with that image. They told me he was 36 pounds at the clinic the night before he died, but when he died he weighed 101 pounds. This was from all the blood and fluids they gave him, to try and save his life. My parents went from being told Justin had an ear infection to him dying less than 12 hours later.
Justin's death is something I will always remember. It has impacted my life greatly. It has made me realize that unexpected things can happen in life. You just have to accept life as it is, and have hope and believe in yourself. Every day is hard on my family and me. We miss him dearly. He will always live on in our hearts. I think his death has made our family ties very strong. My parents believe in me so much. I know I wouldn't have made it through all this, and have become the person I am today without them. They are very strong people. They have taught me that you can overcome tragedy. I saw this first hand when we built a playground in Rutland, in Justin's memory. It is called the Justin Thomas Memorial Park. I love to watch the little kids play there, and to think about the good times I had with Justin. He will always be a big part of my life. I think that his death is the reason why I want to become a pediatric nurse. I want to be able to help kids that are sick. I want them to feel like there is hope. I want to make them smile and laugh, even if it is only for a short time. It would meanthe world to me, and is why I am so motivated to do what it takes to reach my goal.
Kaitlyn, Georgia, lost her 17 year old twin sister
My name is Kaitlyn and my twin sister, Brittany, passed away from bacterial
meningitis on April 20th, 2008. We were 17 and seniors in high school.
Brittany came home from work April 19th and went to bed complaining about a
headache. She woke up at midnight, throwing up and with a very high fever.
My mom and step-dad took her to the hospital, and the doctors ran tests on
her which all came back negative... the only test they didn't do was the
spinal tap for meningitis. About 6 a.m. on April 20th the hospital sent her
home to rest. A couple hours later she woke back up, fell out of the bed,
and pulled herself to the nearest trash can to throw up.. this time we knew
something was not right!! She was throwing up, high fever, couldn't feel her
legs, and was not herself at all. The hospital then admitted her and hooked
her up to IV's and ran more tests.
The doctor kept coming to us with bad
news... nothing we wanted to hear at all. we were trying to get her to pee
in a bed pan for a sample and that's when we realized she was bleeding
internally. I was taking off her jewelry and noticed she had the purple
splotches everywhere on her...we ran and got the nurse! From then on
everything happened very quickly...her liver started shutting down, she
couldn't breathe on her own, so she was hooked up to a ventilator, and then
her kidneys shut down, and her whole body had turned purple from the blood
rushing to the surface of her body. All the family was there and tons and
tons of friends. Our dad got there literally 5 mins after she had passed
away.... the nurse took him in the room with her and didn't even tell him
she had passed away until he saw my sister and asked what happened.
We all had NO IDEA what happened...we were so confused and lost. We didn't
find out until 3 days later that she had passed away from bacterial
meningitis. I am so thankful there is an organization out there to help
educate other in this disease.
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