Neonatal Sepsis - Matt's Story

When my husband and I first found out I was pregnant, we were elated! We bought the usual books, immediately started picking out baby names and called everyone we knew. I knew that my pregnancy was going to be a breeze. Was I wrong! Six months of exhaustion, and constant morning-afternoon-night-and middle-of-the night sickness made pregnancy unbearable. When the doctor told me I had a faulty placenta and that the baby needed to be taken by emergency C-section three months early, I have to say that I was a bit relieved. ANYTHING sounded better than another three months of being pregnant! 

Was I wrong! And so on July 12, 2006 our son, Matt, was born. He weighed a whopping 1 pound 11 ounces and measured 12 inches at birth. He was small but mighty and during the first few weeks of his life he flourished. I just knew that our NICU stay was going to be a breeze. He was going to be home in no time! Was I wrong!

After about two weeks in the NICU, things started to go downhill for Matt. He was having problems digesting his food. He was having more than his fair share of apnea episodes. His SATS were slowly lowering, eventually enough to put him back on his ventilator from which had been easily removed after only 4 days. Ultimately we found out that Matt had  an infection. The doctors weren’t too concerned and so, being a new NICU mom, I wasn’t too concerned either. I knew everything was going to be fine. Give him some medicine and the “Boy Wonder” would pop right back up. No worries! Was I wrong! Matt became a very sick little boy very quickly. While he has battling his first infection, along came another one. Matt’s IV pole was filled with machines delivering all different types of medications. According to the doctors, some were for the gram negative infection and some for gram positive infection. What did that mean?? If only there was room on that pole for a little morphine! I sure could have used some to calm my nerves!

Sadly, no matter what medications they pumped into Matt, nothing seemed to work. Both infections were relentless and he got sicker and sicker. Matt became septic. Sepsis occurs when chemicals released into the bloodstream to fight the infection trigger inflammation throughout the body. This inflammation can trigger a cascade of changes that can damage multiple organ systems, causing them to fail. The infections and medications were streaming through Matt’s body leaving virtually no organ untouched. Because of this, on a particularly harrowing night, his heart rate rose extremely high--to 237. It normally ranged between 170-180. His blood gases were very worrisome as well. He wasn't releasing carbon dioxide like he should and it was building up in his system. 

The doctors didn't know whether Matt would make it through the night. In the end, Matt surprised us all. He made it through--but not before he was put on a special respirator called an oscillator, and was pumped full of blood, platelets, and antibiotics. He was very swollen because of all of the fluids that the doctors put into him, yet he survived. The infection was still very strong, and yet he survived. It was his own strength that got Matt through that horrible night.

Obviously, Matt was a very sick little boy. Sepsis was wreaking havoc on our tiny son and there were physical changes to prove it. Our tiny 1 pound 11 ounce baby was retaining so much fluid that he became a 5 pound baby overnight. He looked like Quasimodo! His skin was stretched and glassy looking. He was so swollen that the nurses were unable to close any diapers on him. His incision from a prior surgery was stretched so much that it broke open and was constantly oozing. He couldn’t open his eyes because they were swollen shut. He was a mess! The doctors were constantly telling us to hope for the best, but prepare for the worst. And just by looking at him, I knew they were right. I no longer had any delusions. The infections, the sepsis, were killing my son.

Matt went on like this for a few more days. I watched while the nurses tried to make him comfortable. I watched while Matt was bounced around his bed by the huge oscillator which kept his lungs open with a constant positive end-expiratory pressure ("PEEP") and vibrated the air at a very high rate to help gases quickly diffuse in and out of the his airway. I watched while his kidneys shut down and he got more and more swollen. I watched while he slowly turned so yellow he was almost green because his liver became “insulted” by the infections. I watched while Matt had transfusion after transfusion because his platelets were non-existent. I watched as my son was slowly dying. I even signed a DNR order because the doctors told me that there was nothing else they could do and the prognosis was poor. And then, I watched as my son surprised everyone and turned a corner. For reasons unknown, Matt began to respond to the medications. He began returning negative cultures and his life got better. I can’t say that he looked any better, but his outlook looked better. And so, the doctors recommended that I rescind the DNR and that they try to fix the damage that was caused by Matt’s sepsis. The first thing they dealt with was his bloating.

While Matt’s nephrologist was on his case from the beginning, he now made a life-saving decision. Since the diuretics weren’t working, he placed Matt on peritoneal dialysis to drain him of the fluid that was built up in his body. And so we spent our days in the peritoneal cycle...fill, drain, dwell. The doctor placed fluid with a special isotope into Matt’s belly. Those isotopes bound themselves to the fluid in his body. And then they drained all of the fluid from Matt. The cycle was repeated a number of times a day for two weeks and as the cycles continued, we saw Matt start to shrink. It was amazing. Matt eventually looked like the little baby he was. Once he was back to his original size, they moved on to other serious issues caused by the sepsis. Matt was diagnosed with hydrocephalus. The infections caused a blockage between the third and fourth ventricles of his brain. And so, a reservoir, and then ultimately a shunt, was placed to circulate the fluid that was building up around Matt’s brain. It was months and months before Matt returned to his normal color because his liver refused to heal itself quickly. But, eventually that was fixed as well. 

It is funny how a short two weeks of Matt’s life had such an impact on him and on us. Those two weeks caused Matt a lot of problems and caused his family much heartache and worry. Matt was a very sick little boy. And yet today he is running around bothering his sisters and bringing much joy to our lives. I can’t say that Matt came out of his NICU experience unscathed. And I can’t tell you we came out of it unscathed, either. But, we did make it and we are amazed and enchanted on a daily basis with our treasured son. He is a joy!

Joy Tristano

7/01/14

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