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“This virus stole my son from me”, Parents of a newborn say their baby started having seizures and was placed on a ventilator before he died at just 34 days old after contracting a virus which doctors say may be underdiagnosed

One week after the baby was born, his parents noticed that something was wrong. The child, who was a born a healthy full-term baby, wasn’t eating and had redness on his chest, his mom said. The baby boy reportedly came home to a loving family and 2 year old sister. Ten days later he was rushed to the children’s hospital with seizures. Unfortunately, the newborn baby stopped breathing as they arrived. He was immediately intubated and placed on a ventilator and a medically induced coma, while doctors in the NICU tried to determine what is wrong with him.

According to Katherine and her husband Mitchell DeLancy, when their son Ronan was born, he was a happy and healthy baby. Unfortunately, when the baby was just 1 week old, his mother noticed that something was wrong. Ronan was a born on May 21st. On June 2, his parents noticed that he was very upset and was crying a lot. Kat, who is a healthcare professional, a clinical dietician who works with diabetes patients, also noticed that Ronan had a red chest that didn’t look like a rash and no fever, but he cried for two or three hours, per reports.

After checking with the paediatrician by phone, she took him in the next day. The newborn baby reportedly had a full exam and the doctors suggested he had gas. She took him home and later that night, the child stopped eating. The parents then took the baby to the hospital and doctors told them that his oxygen was low. Shortly after, Ronan started having seizures.

Katherine Delancy reportedly told NBC Connecticut: “At that point in time, they continued doing testing to try and figure out what it was, and all of the viral markers came back negative. So, they were like, ‘well, we don’t think that he has a virus because everything that we’ve tested has come back negative.’ And then, they finally found parechovirus in his system, after doing multiple tests and doing a lumbar puncture, they found it in his cerebrospinal fluid.”

After countless blood tests, genetic profiles, lumbar punctures, CAT scans, and MRIs, the doctors told the parents that they believe this was caused by the human parechovirus (HPeV), a relatively unknown virus that can be devastating to newborns. In Ronan’s case, the virus attacked his brain and has created a condition called Encephalomalacia, which means the white matter in much of his brain has been destroyed.

According to the parents, the baby reportedly spent nearly 3 weeks in the hospital fighting parechovirus and the effects of extensive brain damage from constant seizures. Unfortunately, the child died at 34 days old.

According to WAFF, YNHH recently sent out a newsletter alerting other physicians about the virus, saying it may be underdiagnosed due to lack of awareness.

Ronan’s mother is now trying to raise awareness about the Human Parechovirus. “This virus stole my son from me and I plan to do anything in my power to stop that from happening to anyone else. People are listening and learning. I’ve had people reach out to me from the other side of the country after hearing Ronan’s story. That’s thanks to everyone helping me to share it. I could not have done that alone.

The first step is awareness, the next step is action. We have plans to make every pediatricians office in Connecticut get information on the signs to look for this virus and hopefully down the line have PCR testing available for any sick newborn visit. I think if maybe that was an option for Ronan when I brought him in, maybe things could have been different.

Maybe if the virus was caught sooner, he might be with us today. A long term goal is to inspire funding to be put towards research for a treatment for this virus. Maybe down the line antivirals can treat it or vaccines can prevent it. I’ve started a website ResearchForRonan.com that I plan to update with information on Parechovirus.

Thank you everyone for being there for us. It means the world to us to know Ronan made an impact on the hearts of everyone and will hopefully continue to impact change to help avoid this devastation for another family,” Katherine DeLancy wrote on the family’s GoFundMe Page. 

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