Did you know Cold Sores can be deadly to infants? Over the last 8 years, I’ve become a self-proclaimed expert on HSV1, the virus that nearly killed my daughter Zephyr. May is HSV Awareness Month so this is an excellent time to share our story. Let me preface this blog by telling you Do Not Panic about what I am sharing with you. Simply be aware and tell every new parent you see.
Our daughter Zephyr was born 11/1/06 at Renown Regional Medical Center in Reno, NV. Twelve days later she developed lesions on her head which turned out to be HSV1 – the Cold Sore Virus. After a two-week hospital stay we thought “whew, she survived”, but it was just the beginning. Two weeks later she was back in the hospital with new lesions. Again, after a week in the hospital we were thankful the lesions were just on her skin. Herpes virus manifests in a few different ways…skin, disseminated (infecting the whole body and organs), and CNS the Central Nervous System. When it stays just on the skin it’s not as dangerous as the other two. Three weeks later (and after we thought we were through the worst of it) the virus moved into her brain causing encephalitis, seizures and several brain lesions.
The most common belief from physicians is that the virus is spread from mother to baby during birth. This is why if a woman has a history of genital herpes (HSV2), the OB will prescribe anti-viral medication and/or perform a cesarean if lesions are present at birth. However it can also be passed to babies from a kiss on the head, or close contact with someone shedding the virus. There need not even be evidence of a cold sore! In Zephyr’s case there was not. We will never know exactly how she got it. However, one statistic says that 95% of individuals carry the virus. It could have been me. It could have been any of the people who were in contact with her after her birth.
Some Dr’s warn pregnant mothers of the dangers of HSV2 to newborns. However, I have never heard of any doctor warning of the dangers of HSV1. It seems common sense to not kiss an infant when you have a cold sore. Right? But just getting the AWARENESS out about how dangerous the virus itself ‘can’ be (with or without visible signs of a cold sore) should be common knowledge that every OB and Pediatrician share with new parents. Our daughter was lucky to have lived. Over half of the infants whom develop HSV as infants pass away. Most of those that survive have developmental delays, Intellectual Disability and neurological problems. A very small percentage make it through to develop normally.
Thanks to what we believed to be a miracle, Zephyr lived. But she has lasting neurological damage and seizure disorder. She will likely be on medication for life. She has received physical, occupational and speech therapies. She had a recurrence of encephalitis at age 3 which created another brain lesion. Fast forward to age 8, we don’t know what will happen long term, or if she will ever be “safe” from this virus. But we feel fortunate that she is an amazing little, beautiful, quirky human who has defied all odds.
Over the past 8 years, and thanks to Facebook, I have now found approximately 25-30 other families across the World (there are only a handful in the United States) who have either lost their infants/children or have children with severe disabilities from the virus. I will provide a link to the Facebook site I set up for Zephyr long ago, along with the HSV Awareness page that myself and several of these other moms started. You will find other stories, some far more tragic than ours.
Monique Stanfield is a Reno resident and mommy of two daughters (8, 5), one angel baby and her 18 year old step-daughter. She holds a Bachelor of Science degree in Human Development, Masters degrees in Marriage and Family Therapy and Clinical Psychology and a Doctorate in Clinical Psychology. She is a Licensed Clinical Psychologist and works as both a Professor, and the staff Psychologist in a local pain clinic. In her spare time she plays local venues with her band The Derailment, and enjoys sharing music and nature with her daughters and husband.