Please ask the CDC to recommend HSV Herpes testing for all pregnant women.

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Rich Mancuso
Rich Mancuso signed this petition

For most people, the idea of losing a loved one can be devastating, but the idea of a mother losing her newborn within a few weeks of his birth, a death which could have been easily prevented, is a special kind of nightmare.

Below you will find the story of Daniel, a four week old baby who lost his battle, not to cancer, but to a simple virus called herpes.

Meet Breanna and her son, Daniel.

“November 4th, 2019, was the happiest day of my life. I gave birth to a healthy baby boy. He was named after his Daddy. His name was Daniel, or DJ for short. On December 2nd, my son Daniel passed away.”

“He had contracted herpes from me during birth, and unfortunately, we didn't catch it in enough time to save his life. Daniel was a miracle baby. I still remember the day I went into labor with him like it was yesterday. I was standing in the kitchen when suddenly my water broke. I was so excited, but nervous. I had no idea what to expect. I told my partner that it was time. We were both giddy but anxious too. Our first child would be here within a few hours! Surprisingly, I wasn't in any pain. When we got to the hospital, they told me that I would likely need to be induced since I ruptured 3 weeks early and labor wasn't progressing quickly enough. Sure enough, I was induced.”

“This caused pain to come on very powerfully and very suddenly. I was absolutely overwhelmed by the intense pain. I wasn't able to remain still. This caused a problem. They needed to keep a monitor on my abdomen to assess the baby's heart rate to be sure there wasn't any sort of complication during labor that would require immediate attention. Their solution was to use an electrode that would puncture the baby's scalp to monitor the heart rate. This is where it all started. Hours later, I delivered my sweet baby boy. I was so happy, and so was his Daddy.”

“This is where our greatest nightmare began to unfold. He had herpes simplex virus. He had contracted it from me through the open wound on his head. But how? I didn't know I even had herpes! I was never tested for it during my standard std screening while pregnant, so how could I have known? I never had any symptoms, even the day I gave birth to my beautiful son. We slowly watched our son decline. I never felt so helpless in my life. We prayed and prayed and cried for days. We couldn't save him. His seizures could not be controlled. He ended up with a condition called status eplilepticus, meaning his seizures were not ending. The virus was literally eating his brain. The doctor came in and told us she was very concerned about his condition. He acquired another symptom called diabetes insipidus, meaning his brain had lost the ability to control the amount of urine it was releasing. She sat us down and told us the hard truth. She was not seeing a hopeful outcome from the extent of brain damage he was having, and they still couldn't control the seizures. With eyes full of tears and a knot in my gut, I asked her if she had seen a baby in his condition survive this. Her words will forever haunt me. She said, “I have, but I have never seen them be normal. If he lives, he will never walk; he will never talk. He will never eat on his own...” I died inside. He died in my arms around midnight December 2nd. This pain was unbearable.”

Complete story here: https://pennyforyourthoughtscampaign.com/blog/f/daniels-story

The sad truth about this nightmare is that if Breanna had been tested for Herpes, Daniel would be alive today. So why didn’t they test her…

 

Why doesn't the medical community recommend testing for Herpes?

Many people assume their doctor will test them for everything when they ask for an STD panel test. But what most people don't realize is that many doctors will omit the HSV 1/2 test, or if they do test  for Herpes (and it comes back positive, but you are not complaining of symptoms), they will say everything is fine. One of the reasons this happens is because most of the population (who are positive with Herpes) are doing just fine. But the truth is that over 100 million people suffer in very terrible ways and they do so in silence. Remember, if no one is complaining, everything must be okay, right? Remaining silent is a terrible thing.

Directly from the CDC website:

"The CDC does not recommend herpes testing for people without symptoms. This is because diagnosing genital Herpes in someone without symptoms has not shown any change in their sexual behavior (e.g., wearing a condom or not having sex), nor has it stopped the virus from spreading. Also, false-positive test results (test results that say you have Herpes when you do not have the virus) are possible. Even if you do not have symptoms, you should talk openly and honestly about your sexual history with your doctor to find out if you should be tested for any STDs, including Herpes."

Although the CDC does not recommend that everyone gets tested for Herpes, herpes testing may be useful in some situations. Herpes blood tests (also called type-specific HSV serologic tests) can be useful:

  1. If you have genital symptoms that could be related to Herpes,
  2. If you have (or have had) a sex partner with genital Herpes, or
  3. If you want a complete STD exam, especially if you have had multiple sex partners.

Source: https://www.cdc.gov/std/herpes/screening.htm 

"May be useful" is not the same as "should be tested." Ignoring HSV testing in pregnant women does not prevent neonatal infections, birth defects, or death. It simply allows them to happen.

 

How does genital Herpes affect a pregnant woman and her baby? 

It is crucial that pregnant women infected with HSV-1 or HSV-2 go to prenatal care visits and tell their doctor if they have ever experienced any symptoms of, been exposed to, or been diagnosed with genital Herpes. Sometimes genital herpes infection can lead to miscarriage or premature birth. Herpes infection can be passed from mother to child resulting in a potentially fatal disease (neonatal Herpes). It is important that women avoid contracting Herpes during pregnancy. 

A woman with genital Herpes may be offered antiviral medication from thirty-six weeks gestation through delivery to reduce the risk of an outbreak. At the time of delivery, a woman with genital Herpes should undergo careful examination. If herpes symptoms are present before birth, a cesarean delivery (also called a 'C-section') is usually performed. Source https://www.pfw.edu/dotAsset/4258cceb-4319-47a5-9de4-588df263c32f.pdf

http://www.ashasexualhealth.org/stdsstis/herpes/herpes-and-pregnancy/

However, if a woman is unaware of her positive status, and testing is not recommended, this puts her child at high risk. It's clear that not requiring mandatory testing on pregnant women puts everyone at risk and the potential for that risk raises exponentially without this requirement. 14,000 babies are born each year to women who don’t know they have herpes. Of these 14,000 babies between 1,600 and 2,000 die. https://www.who.int/reproductivehealth/topics/maternal_perinatal/estimates-neonatal-herpes-cases/en/ 

https://pubmed.ncbi.nlm.nih.gov/29356762/

https://pubmed.ncbi.nlm.nih.gov/14726453/  

This is the story of Daniel. This is the heart of this petition.

PLEASE SIGN THE PETITION.  Ask the CDC and the medical community to please change their recommendation and make Herpes testing a mandatory part of a pregnant woman’s regular health care screenings.

Thank you

Rich Mancuso, Author and Founder of The Penny For Your Thoughts Campaign