My son, Ronan, died due to Human Parechovirus. He was 34 days old.
At 14 days old, I brought him into his pediatricians office after previously being evaluated at 10 days old and 5 days old for his normal well-baby visits. His only symptoms were that he was fussy, seemed to be feeding less and had a bright red rash on his trunk. He was sent home from his pediatrician after a full check up and was thought to just be gassy or starting to have colic. That evening he calmed down, but appeared pale and more sleepy than usual, so at 2am, I brought him to the emergency department. Within minutes of entering the hospital, his oxygen saturation dropped, he required breathing support and was intubated. Shortly after he was stabilized, he began having seizures. He required 4 seizure medications in high enough doses that he had to remain in a medically induced coma to remain seizure free. Each time they tried to reduce the medication to take him out of sedation, the seizures came back. He had three MRIs. The first one looking bad, the second one looking different, but equally bad, and the third one looking incredibly worse. The third MRI showed irreversible brain damage - that the areas that were first damaged were now just holes. Although the newborn brain is neuroplastic or has the ability to adapt and other areas take over function, it cannot repair areas that no longer exist. This explained the inability to take him out of the medically induced coma without recurrent uncontrollable seizures. He remained intubated and sedated until his death.
A virus was identified in his cerebral spinal fluid several days into his hospitalization, Human Parechovirus. It took days to find it since it is not well known and he had no bio markers of a virus (no fever, no elevated CRP, white blood cells) which unfortunately appears to be how this virus often flies under the radar. This virus was first identified with an outbreak in Australia in 2014 as well as subsequent outbreaks in Japan and the UK, but no known cases recently or in the United States. There was limited information on this virus as the amount of reported cases have been in the low 100s worldwide. I spent each day and night reading every medical journal article I could find on this virus. I also did the less conventional research of finding other mothers on social media who had children diagnosed with this virus. The large majority of cases appeared to be in Australia and the UK from several years prior, but after I joined a Facebook group, I saw that several new members had joined within the past month. All of the recent cases were in the US - Texas, Florida, Alabama, North Carolina, Tennessee, Connecticut. We all began talking and wonder if an outbreak is imminent.
The virus may be very common- some studies showing it can present as a mild cold or ear infection in toddlers/school aged children or a GI bug in older children or adults, but it can be severe in newborns, as was the case for Ronan. The newborns who survive this virus typically have developmental issues in speech, motor skills, behavioral issues, and can range from mild to severe cerebral palsy. It’s also been speculated that this virus may be a link to SIDS or Sudden Infant Death Syndrome, which may have been Ronan’s case if we just put him to bed on June 4th. I’m glad we know his reason for his illness, but we still don’t know how or where he got it or why it progressed so much and caused such extensive brain injury. We were so incredibly cautious, so I say confidently, if it could happen to our family, it could happen to anyone.
It will be my life’s mission to share his story and bring awareness to this virus. Yale has developed a PCR test that could make identifying this easy since the symptoms can be overlooked. My hope is this will soon be available in every pediatricians office, just as a covid test is. Although there is no current treatment other than symptom management (manage seizures, ventilation if needed), I’m hoping with raised awareness, funding will be put towards researching antivirals or vaccines.
I hope my son is the last child to lose his life to this, but unfortunately know he won’t be. Please make as much noise as you can and share with everyone you can. Please help to save some other family from this devastation.