We never think that one meal, one illness, will take us somewhere we’ve never been and never want to go …
Noah’s journey began in September of 2013 during a multistate outbreak of Salmonella Heidelberg. Back then, unlike his siblings Adam (6) and Anna (5), our beautiful 18-month-old Noah was our social butterfly. He loved to give love to anyone that would have it! Most of all though, he loved music. Even as an infant, when mommy was silent, he would hum himself to sleep as we rocked in the chair each night. He loved to “fix” things with his daddy James, and he was growing into a strong little man. Our family’s life was so full of joy until everything came screeching to a halt.
Nanna, my mother-in-law, was the glue that held our big family together. If Nanna didn’t hear from us least once a week, she would call to ask if we were mad at her. She was a collector and a nurturer of people, and you couldn’t help but love her.
In August (2013), she was diagnosed with cancer that metastasized in her colon. Doctors performed surgery and removed part of her small intestine, leaving her with an ostomy. (For those of you that don’t know what an ostomy is, it’s a small hole in the front of your stomach that is used to pass stool into a bag, giving the lower intestinal tract time to heal.) Even though Nanna made it through surgery with no complications, the cancer was a devastating blow to our close-knit family. Each of us tried to spend as much time with her as we could because, for the first time, we realized how fragile time can be.
A few days before Nanna was to start chemotherapy, she became very ill. She called me and her other daughters over to take her to the hospital. When I arrived, Nanna was too weak to stand. Her diarrhea was so severe that the ostomy bag would not stay on her stomach. Stool was pouring everywhere. We had to hold towels over her stomach and a trash can for her to puke in as we rushed her to the emergency room. Nanna spent a week in the hospital and was diagnosed with salmonellosis caused by Salmonella Heidelberg. She couldn’t start chemo until the salmonellosis had resolved, a delay that may have shortened her time with us. It was a difficult time for all of us, however, we had no idea how deep her battle with Salmonella would spiral into tragedy.
Soon, Nanna was feeling better and starting her chemotherapy treatment. Things were looking up until Noah (18 months) and his cousin Ethan (8 months) spiked a fever on the same day. Initially, we assumed they both shared a bug that was going around and did not think much of it. Two days later, both boys were spiking high fevers of 102°+ and we decided it was time to see a doctor. Ethan started developing other symptoms and after he started having severe and bloody diarrhea, my sister-in-law rushed him to the ER. Doctors ran a stool sample and discovered he had been sickened by Salmonella Heidelberg. The Salmonella likely either came from a shared meal or directly from Nanna. Thankfully, Ethan was treated with antibiotics and was all better within a few days.
Noah, with no other symptoms, still only had high fevers. I kept taking him to the doctor trying to figure out what was causing it. I told them that Noah had been exposed to salmonella and explained the history, but the doctors thought that if Noah did not have any gastrointestinal symptoms, then he simply could not have salmonellosis. They kept running tests. With catheters to collect urine samples, multiple blood tests, throat swabs, flu tests and chest x-rays, they seemed to be looking at everything. However, no one tested Noah’s stool, and at that time, we didn’t know to ask. At one point testing positive for strep, Noah was given antibiotics, but the high fevers persisted. Every 4 hours after the Motrin and Tylenol wore off, Noah’s fever would spike to 103 and he would cry. This went on for an entire month! We had countless visits to the doctor and multiple tests with no explanations, until I finally begged his doctor to streamline the testing by admitting him to the hospital.
When we got to the hospital, I once again told the doctor Noah’s history, about his exposure to salmonella and all the tests that had already been run. I was really hoping that she would have the answer to what had made my son so very miserable for so very long. Two days into the admission, Noah lost control of one side of his body. He began to run into objects as he walked, and when his fever climbed again, we noticed that one side of his face drooped as he cried and screamed. Rushing Noah to a CT machine, the doctor discovered a large mass on his brain. When he came back from the CT scan, my husband and I were met by the doctor and four nurses. They said that Noah had blood in his brain and that it could only be caused by blunt force trauma to the head.
The doctor demanded that we explain what had happened to him.
At that moment, my entire world came crashing to my feet. I had no idea who or what had hurt my child. And to make matters worse, they seemed to imply that it was me or his father who had hurt him! They told me that Noah had to have surgery to remove the blood or he would die. We had to take him to a different hospital for the surgery, and the wait for the ambulance was excruciating. I had to ride along with Noah knowing we’d be met by Child Protective Services when we got there. I couldn’t bear to look at my son knowing the extreme pain and danger he was in. The guilt I felt for not knowing how my baby got hurt very nearly overwhelmed me.
Sitting in the hall in front of his room, I spent the time vomiting in the trash, and hyperventilating – too scared to go in and see him that way. I just wanted someone to fix my baby and bring him back to me. If it weren’t for the kindness of one nurse who helped me pull myself together, I would not have had the strength to be there for my baby.
When we arrived at Cardon Children’s Hospital, doctors began to work Noah up to examine his “injuries”. They ordered a full body X-ray to look for a skull fracture or other broken bones. Noah had to be physically held down on the table by his dad while they took the pictures. I sat outside the room because I couldn’t watch. When the results came back, Noah had no sign of injury, past or present. We still had no answers. I was devastated, confused, and completely lost.
Next, the doctors sent in an ophthalmologist to check Noah’s eyes for evidence of shaken baby syndrome. Little did we know, this would be the doctor that would save his life. Inspecting Noah’s eyes, he saw no sign of abuse. He did, however, realize that the blood vessels in his little eyes were so severely squished that Noah was going blind. He immediately ordered an MRI to take a closer look at the mass. About an hour after the MRI, a surgeon came in and said that the mass in Noah’s head was not blood, but a rapidly growing abscess.
At that point, they knew it was an infection that caused all of Noah’s problems, but they didn’t know which bacteria was causing it. When you see medical dramas on television, you have this idea in your head about informed decisions and doctors weighing options, but the reality of it is nothing like that. Noah needed immediate surgery to relieve the pressure in his head or he was going to die. We signed a paper and left the talking for later. They rushed him back and left us waiting for answers. I can tell you that this was the worst 4 hours of my entire life!
When Noah came back, the surgeon came to speak with us. We were told that some of the abscesses in Noah’s brain were inoperable. He removed what infectious material he could, but Noah would need to be placed into a medically induced coma to prevent more bleeding into the brain. They tried putting Noah to sleep with medication, but he refused. He was such a fighter. He was fighting for his life and did not want to sleep. The doctor gave him all the medication he could before deciding it was ok for him to be awake. It took Noah two hours to drift off to sleep while holding my hand and staring into my sad eyes. I wanted nothing more than to hold him, but all that I could do was sit by his side and pray. If Noah could survive the first three days, he might have a chance at making it through this. They gave Noah all the antibiotics they could and sent the pustulent material from his brain off to pathology.
Three days later Noah was awake. His poor head was so swollen that he could only open one eye, but he was alive and awake! When his doctor came in and told us that pathology results were in, we finally got the answers we had been searching for so long. He said that Noah’s abscess was full of Salmonella Heidelberg which caused his infection. When he said those words, I immediately began sobbing. He asked why I was crying, and I told him that we knew where it came from. We had all eaten with Nanna, cared for her, and loved her after the cancer diagnosis and bout with salmonella. Some part of me wished I could have pushed harder to get him a correct diagnosis sooner but logically I know that would have been impossible. All I could do was pray that he would survive.
Noah spent almost a month in the hospital and was finally able to finish his treatment at home. He had a PICC line for antibiotics that we hooked up 3 times a day. The doctors had no idea how long Noah would need antibiotics, because this had never happened before. Medical literature on brain abscess was scarce and no one had ever had this type of salmonella infect the brain before. I spent hours each night as Noah slept reading as much as I could about everything so that I could try to understand what happened and how to help his recovery. The doctors monitored Noah’s recovery with MRI’s that started out weekly, until one day, Noah’s infection was considered resolved. We were so elated that he had finally beaten this war with salmonella, but we soon realized that this was only the first of many battles.
Sometime after his illness Noah was playing and exploring like any other 2-year-old. He was developing much like his gifted siblings and had a huge vocabulary at an early age. Our family was finally getting back some normalcy. About 8 months after his release from the hospital, Noah woke up one morning and lost his ability to speak fluently. We rushed him back for another MRI.
Being admitted to the hospital again was very hard for Noah. He had this fear of doctor’s masks for years after his experience. When I stepped foot into the room, all the terror came rushing back for me and I’m sure Noah felt the same way. Once again, I hated not knowing what was wrong with my son.
When we finally got results, we were told that he was stable, and that the doctors had not found anything that they had not already seen in his scans. They said that his speech had been affected by his illness and we would need to learn how to cope with this new normal. When I tell you that my son has a stutter, that does not do justice to the pain and struggle he goes through to do something as simple as speaking.
The speech therapist told us that the best thing we could do is stay calm and not try to fix or point out the stutter for the time being, and it was the hardest thing I could do. It was excruciating to listen and stay calm as a I cried inside for the pain he felt when he talked. Eight years later the struggle remains, and it still breaks my heart.
As Noah got older and reached school age, we saw new problems emerge. Noah was diagnosed with neurocognitive disorder resulting from his salmonella infection and brain injury when he was 18-months old. He has learning disabilities including dyslexia, dyscalculia, and dysgraphia. Behaving appropriately in public places is a struggle due to a sensory processing disorder. Noah is very sensitive to sound and visual stimulation. For instance, when someone is talking to him, Noah hears background noise at the same level as the person speaking. He can’t filter out the sound of the air conditioner and focus on one voice. In the classroom, when kids are noisy or lights are bright, Noah struggles. It is very uncomfortable, if not painful, for him.
Noah is 9 years old now (2022) and, for all he’s been through, is still sweet as can be. He likes dolphins, riding his scooter, playing baseball, and playing Minecraft. Noah still goes to therapy four times a week and requires a 1-on-1 aide to help him get through the school day. He has a gifted brilliance and will talk your ear off about black holes, climate change, and universal health care, but he struggles to read a paragraph or sit in the classroom.
After his illness I returned to school and got two degrees just to help navigate the world of educating Noah. Every member of our big family was profoundly changed by these experiences. Noah will struggle with effects of his illness for the rest of his life. It still shocks me that one illness, one meal, can quickly spiral into tragedy that lasts a lifetime.
