Simon, a healthy baby from Chicago, who contracted MRSA and did not survive his infection.
"MRSA took my son swiftly and totally. Now I have a window into what so many families experienced 50 years ago: the death of a child caused by a bacterium or virus."
My name is Everly Macario, and I have a doctorate in public health. I chose a career that would allow me to have an impact—encouraging people to lead healthier lifestyles by assuming an overall preventive approach. Unfortunately, I was ill-prepared to help my child face a virulent foe, and I was unwittingly made witness to the reality of life decades ago, when parents frequently had to bury their children—a far different public health picture than we enjoy today.
My son Simon was a tranquil baby until he was about 15 months of age, when he started to get sick on and off, primarily exhibiting the typical health problems of children his age—dehydration, ear and throat infections, asthma and allergy symptoms. In the beginning of April 2004, doctors prescribed both antibiotics and steroids so that Simon could breathe better after a throat infection and difficulty breathing. Simon seemed to be recovering just fine … until Friday morning (April 16) when he awoke with a primal terrified shriek (a sound neither my husband, Jim, nor I had heard from Simon before) and a fever. My husband decided to take Simon to the emergency room at 7:30 a.m.
Once there, the doctors ran the standard battery of tests (chest X-ray, oxygen-level test) only to speculate that he may be an asthmatic kid. When I joined Jim and Simon at the ER an hour later, Simon was sleeping on my husband’s lap looking so angelic; the reddish tint from his blondish/brownish hair glowed in such a way that it made me think there was a halo surrounding his beautiful, cherub-like face. He seemed so peaceful and content in his daddy’s lap; I felt relieved.
Simon and I stayed in the ER until 1 p.m. that afternoon. Given how irritable he was, I could tell something was really wrong … he truly was inconsolable. When my husband came to pick us up, he noticed Simon’s lips were blue as we walked out the ER doors. We went back in and pointed this out to the doctors. They, once again, measured his oxygen level and informed us that he was within normal range. We then went home and gave Simon some albuterol administered via an inhaler. When we did this, Simon’s eyes rolled back into his head in such a way that really alarmed us. But, we said to ourselves, “He’ll be fine; he’s just sick like any other kid his age gets sick; it’s temporary; he’ll be fine.”
That afternoon, Simon vomited the little milk he had had that morning and lied limply in my arms—something that terrified me as I was used to a more wiggly and restless Simon. He kept asking for “agua” (water in Spanish) and drank about four “sippy” cups of water, only to vomit all of it soon after. I really panicked when his cheeks and forehead were cold and his lips were turning blue again. His nostrils were also flaring, and he was breathing so heavily at this point that his chest was expanding and contracting in the shape of a barrel.
At about 4:30 p.m., I called the doctor to have her hear Simon’s labored breathing, and she told me to call 911. Before I knew it the ambulance arrived; the EMTs applied an oxygen mask to Simon’s face and brought him to the ambulance. Again, I noticed how uncharacteristically limp Simon was in one of the ambulance crew team’s arms–he would normally have been trying to wiggle out of a stranger’s arms and would have been screaming for me. In the ambulance, they performed the oxygen-level test, only to inform me, again, that his oxygen level was fine. At this point I was getting a little embarrassed that I had probably over-reacted. I thought to myself, “All of this commotion, and he is just fine … it is okay to go home now …” Simon’s eyes were wide open, and he was curiously looking around, but was not moving his body.
At the ER I tried to convince myself that this was all, “much ado about nothing.” Well, I was wrong. Way wrong. As soon as Simon was wheeled in, doctors hooked him up to everything imaginable (oxygen, nebulizer, IVs for medication and pain relievers). And, I kept hearing, “Your child is very, very sick. Your child is very, very sick.” At this point I became absolutely hysterical–“basket case” would be the technical term. Simon kept looking at me with his chocolately-brown eyes and long curly eye-lashes, repeating, “Agua, agua … agua.”
Simon was brought to the ICU, where he was going to be intubated to help him breathe. Again, I thought, “OK, he just needs some help breathing. The machinery will give him a break, and he will be fine after he’s been able to rest.” Simon was connected to what seemed like 100 tubes, still with his eyes open and looking around. The doctors, here, kept repeating, “Your child is very, very sick.” I caressed Simon’s curly hair, from his part over to his side, near his ear, and responded, “His eyes are open… isn’t that a good sign?” I knew something was seriously wrong by the expressions on the doctors’ faces. They seemed confused, scared, frantic, and helpless themselves.
I was brought into a conference room, where one of the pediatric emergency room doctors sat me down and began to tell me that Simon had an infection, but the source was yet unknown. Her tone was almost too muted, and the pace at which she spoke seemed very slow. From this point on, doctors kept coming in and out of the room with updates–basically, Simon had gone into septic shock, and his blood pressure was dropping. One fellow who tried to be encouraging said, “Most kids leave the ICU.” It was this fellow, however, who said later that evening that she “didn’t want to lie, that Simon was going downhill.”
By the time my husband arrived at 10 p.m., I knew in my soul Simon was dead. Jim and I gathered around Simon’s bed, along with what seemed like 10 doctors, representing every specialty in medicine. The attending said that they had to get Simon on ECMO (the “heart-lung machine” or “extracorporeal membrane oxygenation”) as this was “his only chance.” I begged the ECMO expert to do what he could to save Simon.
From that point on until Saturday morning (April 17), Jim and I desperately and despairingly prayed for Simon to come out of this septic state somehow. Doctors came in regularly to update us, but we knew the chances were not good when we heard things like, “We’re not sure if your son is going to make it at this point.”
While on ECMO, Simon became incredibly bloated, and his skin turned purplish and scab-like. He had solid plasma “tears” coming out of his eyes. He did not look like Simon.
On April 17, late morning, Jim and I decided to take Simon off of the ECMO machine, as he was not responding to it at all, and he was pronounced dead at 12:45 p.m., without a precise cause of death.
Two months later, the autopsy confirmed that Simon died from methicillin-resistant Staphylococcus aureus (MRSA), probably the “community-acquired” kind versus the hospital-based one. Neither my husband nor I had ever heard of it. MRSA is a virulent antibiotic-resistant bacterium. We have since learned that because of the over-prescription and misuse of antibiotics, as well as the use of antibiotics in animals that we eat, we have created an environment that causes “weaker” bacteria to die off, allowing stronger competing strains to survive. MRSA is only treatable with vancomycin–but first you must have a diagnosis of MRSA.
It seems unfathomable that a healthy, hearty, and beautiful little boy could have breathed in such a bacterium–one that attacked his organs by releasing lethal toxins–and in less than 24 hours was gone. MRSA took my son swiftly and totally. Now I have a window into what so many families experienced 50 years ago: the death of a child caused by a bacterium or virus. It is ironic that the same advances in science that led to healthier and longer lives have resulted in the unintended consequence of the creation of bacteria that no longer respond to antibiotics. As long as we do not treat antibiotics as a precious resource, only to be used in the most extreme cases, we will continue to have a false sense of security in medicine.
Posted: March 2006
Note: Interviews with Everly Macario, who lives in Chicago, can be arranged through the IDSA communications staff.
What can you do to help? Urge Congress to pass legislation to spur research and development of new antibiotics, as part of the Prescription Drug User Fee Act (PDUFA) reauthorization bill. Send an email to your congressional representatives today.
If you would like to share your story, please contact John Heys.
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