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Calling all superheroes! Join us this October in your favorite superhero costume as we raise funds to advance CMV Legislation in MA through research, advocacy, education, and lobbying. This event will be completely virtual.
Costumes are optional, but being super is not!
HOW DOES THIS WORK?
Since this event is virtual, you choose your own starting line, starting time, and route. Your challenge is to walk, run, or roll for 5k (3.1 miles) on October 24th, and if you feel up for it, post your squad pics over social media with the hashtag #superheroesforcmv🦸♀️🦸♂️
IS THERE A FUNDRAISING REQUIREMENT?
No, there is not, but it is appreciated. All funds raised (including registration fees) will go to Northeast CMV, Inc. to help support them in their mission ensuring access to education for women of childbearing age, accelerating research funding, advocating for a vaccine, and advancing legislation for congenital cytomegalovirus (CMV) screening in the Northeastern United States and beyond. Please note, your registration and contributions are not tax-deductible.
WHAT IS CMV?
Congenital Cytomegalovirus (sy·toe·MEG·a·low·vy·rus), or CMV, is the most common viral infection, and the leading non-genetic cause of hearing loss, that infants are born with in the United States. Every pregnant woman is at risk of acquiring CMV. And only 9% of women know about it.
CMV is common, serious, and preventable.
CMV is a member of the herpes virus family. Coming into contact with the CMV virus is a common occurrence, typically harmless to the general population. A CMV infection causes cold-like symptoms, such as a sore throat, fever, fatigue, and swollen glands. These mild cytomegalovirus symptoms last for only a few short weeks and are rarely a cause for concern for healthy kids or adults.
The CMV virus can also cause severe disease in babies who were infected with CMV before birth (referred to as congenital CMV infection).
According to the Centers for Disease Control and Prevention (CDC), between 50 and 80 percent of people in the United States have had a CMV infection by the time they are 40 years old.
WHERE CAN I FIND OUT MORE ABOUT CMV?
We suggest visiting the Massachusetts cCMV Coalition's website or, the National CMV Foundation's website for more information about all things CMV including signs & symptoms, prevention tips, screening, outcomes, and much more.
Grace's story is one of strength, courage, and triumph against the odds. She deals with a myriad of health issues and disabilities daily, but as you can see from her picture, she takes them all in stride and lives each day as the sweetest girl you could ever meet.
CMV was something we had no clue about and had no education on during our many prenatal visits. The overall lack of prenatal knowledge and absence from the conversation from the American College of Obstetricians and Gynecologists (ACOG) has to stop so other parents can avoid, or at least be prepared for, the arduous road we travel down every day. Every family deserves to know about CMV!
We won't stop until Grace's story, and the other children you'll meet below, are said to the World. Will you join us in the fight and help push CMV legislation across the finish line in Massachusetts and beyond?
Aedan is fierce and brilliant and hilarious and filled with so much joy. He is inquisitive and curious and fearless and nothing short of a warrior. Our family's journey with CMV began early on in pregnancy through chance detection on ultrasound and it has been a rollercoaster of fears, triumphs, and continuous unknowns ever since. Aedan suffers from unilateral hearing loss and oral motor difficulties, but he has made incredible strides despite these challenges. We are humbled by just how fortunate we are. A change is needed in prenatal care, as it is sorely lacking the insight on cytomegalovirus that every parent deserves to have. Let's push the conversation on CMV, let's talk about the preventative measures that can and should be taken, let's stop cCMV.
CMV- three letters that changed our lives forever. After what had been a typical pregnancy with a normal 20-week anatomy scan, an ultrasound at 5 months pregnant revealed that Logan was extremely small in size, had abnormalities in his brain and heart, and was very likely to be stillborn. This is when we heard about CMV and its potential effects on an unborn child for the very first time. Just two weeks later, I was admitted to the hospital due to his deteriorating vital signs.
Logan was born on June 24, 2017, at 27 weeks gestational age and weighing only 1 lb, 2 oz. When he was 5 days old we found out that he indeed was sick with congenital CMV. Though Logan had been given a 10-25% chance of survival, he was a fighter. Over the next four months, Logan overcame many obstacles, including moving from an isolette to a crib, lowering his oxygen support, and learning how to breastfeed. After over 100 days and countless hours spent at the NICU, we were finally getting ready to take him home.
Unfortunately, Logan's strain of CMV developed resistance to his antiviral medication and the virus quickly infected his lungs and brain. An MRI revealed severe and irreversible brain damage. Logan had been reintubated, sedated, had a feeding tube, and was looking at very poor quality of life. We no longer felt it was fair to make Logan continue his fight, and decided to continue with comfort measures only. On October 25, he died in his daddy’s arms, with his mommy, grandparents, aunt, and loving nurses by his side. He was just 4 months old. Not a day goes by that we don’t think of and miss Logan. We will always wonder what could have been, had we known about congenital CMV and its prevention.
Mid-January 2020 I was going to my anatomy scan appointment for my son whose due date was June 16th. I knew that the sex was a male due to extra blood tests that checked for genetic and chromosome abnormalities. While I was at the scan the tech said to wait for the doctor. My doctor came in and said did they tell you what they saw? They saw a club foot, placenta previa, and fluid in the abdomen called ascites. So, I want you to go to maternal-fetal medicine for a better scan. So, I went upstairs and they scanned me again. The MFM doctor came in and said my son has fluid in his abdomen and they don’t see it anywhere else, but I have a couple of options. I can let nature take its course, terminate, or get a second opinion plus performing amniocentesis. So, I said a second opinion and amniocentesis. My husband and I also opted to meet with a genetic counselor and being that we did IVF and this was a frozen embryo, we should do more tests if possible. I also had a fetal echogram performed by a cardiologist. He said my sons’ heart was functioning properly but the could see the fluid was pressing against his chest which can cause his lungs to be underdeveloped. We had a microarray, Parvo, and which all came back normal. And about a week later I got a call that my blood results came back normal for bacterial but need more information for viral. My amniocentesis came back positive for CMV. I had no idea what that was.
I met with Dr. Burchett, an infectious disease doctor, at the Children’s hospital in Boston and also Dr. Reiss at Brigham and Women's hospital. From there, we went over what they could do for me and for my unborn son, what could happen, and what my plan was. Ultimately it was to do anything to save my son's life. I had 2 MRIs on my son in the womb which all came back normal besides the fluid in his stomach was growing which causes pressure on his chest.
Then about 2 weeks later they suggested they drain the fluid from his abdomen so his lungs can develop properly. They removed 200cc of fluid and unfortunately, it came back in 3 days. I started to take anti-viral medication at 23 weeks called Valgenclylvior; with hopes that this would cross the placenta and go to the baby.
My son was a fighter.
I would be continuously monitored my whole pregnancy which led me to be hospitalized at 25weeks. I had high blood pressure and protein in my urine, which was pre-eclampsia. I met with the NICU team at that time and the NICU doctor. She told me my son had a 10% survival rate at this point. I had asked them is there anything we can do and she said they can give me steroid injections on hopes it would help develop his lungs. The doctors also so I had severe Oligohydramnios, meaning I had no amniotic fluid. I asked what caused this and they said they did not know but that now my son was 4 weeks behind on his growth (IUGR), underdeveloped lungs, no amniotic fluid, fluid in his abdomen is severe, his chest was small and compressed, his heart was large and showed some fluid, I had complete placenta previa, and my placenta was thick and bulky; but overall he was still kicking, moving, breathing, normal heartbeats.
This child I knew was a fighter and I was not going to stop fighting.
At my 30week appointment, my amniotic fluid was normal, my son was not behind on his growth, the doctors were unsure if his foot was clubbed or not, his brain scans all were normal, head measured same week size as his body, so they said they have never seen this before and they truly believe due to the Valganciclovir it was working! I had such high hopes at this point. I was sent home and told my husband, “he’s not behind he’s growing!”
On Friday, April 10th at 11 pm, I turned onto my other side on the couch and felt a gush. I started bleeding (doctor thinks I lost 1 liter at home). My husband rushed me to Brigham and Women’s, and I went right in. I got hooked up to a monitor and low and behold my boy was moving and kicking all over normal heartbeat. The said the bleeding could be from the complete placenta previa which would be c- section. They wanted to first drain the fluid from his chest and then perform a c section as it would be easier for delivery. They reviewed with me their plan and how after he is born, they will try everything that they can to save him. The doctors were able to remove 1.5 liters of fluid from his abdomen. Then my c section was performed.
I knew as soon as they said “ Here is your son”, something was wrong. I did not hear a cry, anything. So I turned to my husband and said is he alive. The doctor said yes he is hooked up with the oxygen. Right now he is 90% reliant on the oxygen machine.
My husband made the hard decision to take him off the oxygen machine and let him pass in his arms. I remember kissing my son but never held him.
My placenta ended up being attached to my scar tissue and I started to bleed. I do not remember anything other than seeing an O positive blood bag. I had a blood transfusion since I lost 3 liters of blood and needed an iron transfusion. I woke up and was wheeled into a room with my husband and my son.
My son was born at 3:23 am and passed at 5:59 am. We were able to be with him for a couple of hours and take some pictures before we said goodbye. My son was perfect in my eyes and I miss him terribly. The cause of death for my son was CMV according to his autopsy (placenta was very sick with CMV cells, Kidney, liver, and spleen all had CMV cells, lungs severely underdeveloped due to fluid from the abdomen but structurally normal). My husband and I agreed to have a case study on our son's hydrops ( 2 or more organs that have fluid) and find out why it was caused ( genetic, chromosomal, etc) They tested our blood, salvia, and my son's blood, tissue, and saliva. The cause came back as they could not determine other than CMV.
I truly believe that I did everything in my power to help save my son, even if it was only for a couple of hours. I know he is no longer in pain and in a better place. My plan is to continue to help other parents who are pregnant and create awareness about CMV. It is something that should be routinely tested like all the other tests.