My pregnancy had been going smoothly until my daughter’s passing. In December 2017 at 18 weeks I went in to find out the gender. As I laid on the table I could see the expressions change on the ultrasound techs face and already knew. The doctor came in and told me the baby no longer had a heartbeat. In previous scans she was measuring small along with hydrops which were never mentioned to me. I spent a long, sad, week getting ready to give birth to my sweet baby. On December 22, 2017 I gave birth to my daughter, Peyton Jordan DeVose. Peyton was small but so beautiful. After testing the results came back as CMV.
My son Ryan Benoumad was born on April 15th, 2017 at MGH in Boston. He failed the Newborn Hearing Screening and was tested for CMV using a mouth swab while we were still in the hospital. A week later we got a call from the pediatrician with test results that came back positive for CMV. My son was born with progressive bilateral hearing loss and now 4 years later he is completely Deaf with behavioral concerns and now wears cochlear implants in both ears. I was fortunate enough to have my son at MGH Boston, being one of the most prestigious hospitals in the United States, but they are still way behind with any information at all about CMV. I never got my questions answered with medical professionals and when I asked my ob-gyn at MGH why they don’t educate people about CMV her response was “We don’t want to scare people, and CMV is not common.” Needless to say, I was very taken back by her response and all responses from medical professionals for that matter over the past 4 years. I have been forced to become a strong advocate for my son along with educating medical professionals about how common CMV actually is and how preventable this virus is. Even with basic education around CMV, it could have a huge impact on the number of growing cases every day.
Marilyn Benoumad (Winthrop, MA)
Shayne and Megan Gaffney
Massachusetts cCMV Coalition
Bill Filed in Massachusetts to Mandate Universal Newborn Screening for Highly Debilitating Congenital Cytomegalovirus
Bill Aims to Protect and Save Unborn Babies from Common Virus, which has Dangerously Low Awareness among Women
BOSTON, MA (February 22, 2021) – “Why didn’t anyone tell me?” is the most common response from mothers when they find out their child is infected with cCMV, the leading viral cause of birth defects and developmental disabilities in children. As such, today the Massachusetts cCMV Coalition is pleased to announce a major milestone in its mission to educate the public and stakeholders about congenital cytomegalovirus (cCMV). Senator Joan Lovely (D-Salem) and Representative Kay Khan (D-Newton) have moved forward with the filing of House and Senate bills (HD2583/SD1810), an Act relative to the prevention and early detection of cCMV.
Transmitted from mother to child during pregnancy, about 1 in every 200 babies are born with cCMV and around 1 in 5 of those will have long-term health problems, including hearing loss, mental disabilities, physical disabilities, vision loss, seizures, Cerebral Palsy, and even death. Infection is preventable but awareness is dangerously low – 91% of women do not know about it.
Under the bill, the state would be mandated to provide universal newborn screenings for cCMV. The virus goes largely undetected because a majority of affected babies are asymptomatic at birth – about 15% of infants with cCMV will have no symptoms at birth but will later develop hearing loss and other health issues. Testing and early detection is critical for timely intervention and treatment, but because Massachusetts does not have universal screening, many children are not tested for cCMV until the limited window for treatment has passed, which can lead to long-term developmental issues. Currently in Massachusetts, there is no policy on infant screening nor is it part of the normal screening process for infant diseases/disorders. If passed, Massachusetts would make history as the first state in the U.S. to require universal screening.
The bill will also require prenatal education through clinical care and obligate hospitals to begin reporting on positive cCMV cases, which aims to reinforce the prevalence of infected babies in Massachusetts.
“I appreciated the opportunity to participate in a Zoom call last month with parents of children who have cCMV,” said Senator Joan Lovely (D-Salem). “This conversation inspired me to file a bill to mandate education for prospective parents and ensure the Department of Public Health receives data on incidences of this disease. I look forward to working with Representative Khan and the Massachusetts cCMV Coalition to pass this legislation to help families throughout the Commonwealth.”
“After losing my sweet baby, Logan, to cCMV at just four months old, I believe it is critical to encourage the passage of this bill,” said Vanessa Colleran, Massachusetts CMV Coalition member who resides in Oxford, Mass. with her husband and two children. “We need to bring this deadly virus out of the shadows and save future families from the pain and suffering caused by an infection that can be prevented with proper prenatal education. The preventative measures are simple and take just a minute to explain – don’t kiss your children on the mouth or share drinks, wash your hands frequently. Logan might still be here if I only knew then, so I am on a mission to make sure everyone knows now.”
The bill seeks to require universal screening over a targeted approach, as universal screening is more comprehensive and cost-effective. Targeted screening misses the majority of cCMV cases, resulting in added costs to the Commonwealth of Massachusetts.
“I was saddened to learn about the prevalence of cCMV and equally dismayed that the Commonwealth does not require universal newborn screenings or prenatal education for this devastating virus,” said Representative Kay Khan (D-Newton). “I am proud to join my colleague, Senator Joan Lovely, in filing this common sense bill to raise cCMV awareness and improve outcomes for families facing this diagnosis.”
“One of the most heartbreaking things is to tell families that their child’s hearing loss may have been treatable if the cause had been identified earlier,” said Michael S. Cohen, M.D. Director, Multidisciplinary Pediatric Hearing Loss Clinic at Massachusetts Eye and Ear. “cCMV is a common cause of hearing loss, but because we do not have universal testing, many children are not tested for cCMV until the narrow window for treatment has passed. This is a real problem with a simple solution that can meaningfully change the developmental outcomes for these children.”
“I have been doing research on congenital CMV and taking care of infected infants for many years,” said Laura Gibson, M.D., Adult and Pediatric Infectious Diseases at the University of Massachusetts Medical School. “When I talk with mothers about the virus that has infected their baby, they always ask ‘Why didn’t anyone tell me about CMV? If I had only known.’” Major progress has been made in the prevention, diagnosis and treatment of this potentially devastating infection. With the adoption of this bill, we will ensure that pregnant women and their infants born in the Commonwealth have the most up-to-date education, screening, and medical care for congenital CMV.”
As of 2020, twelve states have passed versions of cCMV legislation: Utah, Illinois, Iowa, New York, Colorado, Hawaii, Idaho, Oregon, Texas, Tennessee, Connecticut and Virginia.
To get involved and help protect and save future infants, please visit the bill’s page to learn more here.
About The Massachusetts Congenital CMV Coalition (MCC)
The Massachusetts Congenital CMV Coalition (MCC) is a group of medical professionals, educators, stakeholders, and parents who have united with the common goal of lessening the impact of congenital cytomegalovirus (cCMV) in Massachusetts, through education, prevention, screening, and care. For more information, please visit their website here.
Grace was born severely affected by CMV, and we had to quickly educate ourselves about it, comprehend what was happening, and come up with a plan of action in the NICU when my wife and I couldn’t have been any more fragile.
Let me paint a picture, and bear with me here, of the early days of CMV. Imagine for a moment being told you were having a healthy and happy baby girl, and three days later, finding out she had irreparable brain damage, is profoundly deaf, may have vision issues, and will never walk. Oh yeah, you also need to give her a known carcinogen by mouth for the next six months, which hopefully won’t do more harm than good. While at the same time, making sure your wife is recovering from her emergency C-section and not blaming herself for what happened.
Each day you visit the NICU, you are told more bad news from more new faces, and you just stare at the monitor, hoping not to hear another alarm, while trying to ignore the weeping coming from the other parents. You can only hold her for a limited amount of time before she is placed back into her incubator. She is so bruised from the number of injection sites and closed veins, and this is after two complete transfusions, which she thankfully survived. You walk by other patient rooms with their new babies and see flowers, balloons, visitors, hear laughter and joy, and just ask yourself, “why?”.
You leave every day for weeks without your new baby and cry the entire way home. You call every night before bed to see how she’s doing and to make sure she’s still breathing, and you’re lucky to get 1 hour of sleep each night. We were fortunate to bring Grace home in a few weeks, but many other parents don’t have that luxury and say goodbye in the hospital.
Grace has had to overcome so many challenges, and in 2020 alone, she had two surgeries, 54 medical appointments, and 260 therapy appointments!
I feel if somebody educated us about CMV, things would have turned out very differently.
Shayne & Meg Gaffney
The first time I have ever heard of CMV was when I had to perform an amniocentesis during my 2nd trimester due to the fact that my unborn baby was growing on a slower pace. With the help and guidance of the many doctors and specialists at BWH, we were prepared in the sense of what to expect of our child. Mikayla was born at 38 weeks, weighing 3lbs, 9oz. She was also born with microcephaly due to abnormal brain development. She failed her newborn hearing screening and with additional testing, we found out that she has bilateral sensorineural hearing loss (severe on her left ear and profound hearing loss on her right). We started Mikayla with early intervention right away and that has helped tremendously with her development. Mikayla received her hearing aid at 7 months and her CI when she turned 1. Mikayla is now 7 years old and in first grade. Although she still has a lot of challenges to face due to global developmental delays and feeding issues, she has a fiery and determined nature to keep on going. She now can walk fast with assistance and is slowly taking small steps without. Being non-verbal, she knows how to request through gestures and is still learning a new page set on her communication device. She has definitely come a long way! Mikayla is a smart, charming, determined, wonderful girl that brings pure love and happiness into our lives. I am lucky in the sense that I was informed and educated during my pregnancy and I highly accede on the universal screening for CMV, in hopes that other mothers can also be informed and educated.
When I was about 15 weeks pregnant I caught a viral infection. I thought it was just a regular cold. I worked at a daycare at the time. So over the next few weeks when I had to go back to the doctors for ultrasounds, the doctor acted like things were on the right track. But I wasn’t growing much of a belly by 18 weeks. My mom thought maybe it was because she was my first baby. Well by 23 weeks things started to decline with the pregnancy. But they didn’t tell me things were off until I was 26 weeks. Then I had an MRI done at Children’s around weeks so they could take a look at her brain. They did find calcifications and small cysts on her brain. Then they told me she was not really growing in the womb. She wasn’t getting enough nutrients through the umbilical cord. So I had to keep going back twice a week for ultrasounds to see how she was doing. They wanted to wait until I was further along to basically deliver. So I had an ultrasound at 29 weeks and the doctor said she was in distress and it was that time to finally get her out. She was born at 1 lb, 6 oz and she spent 3 months in the NICU. After she was born they did test her for CMV and she did test positive. I also tested positive as well. She was not able to be breastfed because the doctors were not sure if she would get more sick drinking from me. She had multiple eye exams, head ultrasounds, picc line, multiple tests done. She had to go to Boston Children’s to see the infectious disease doctor. CMV affected her in that she has microcephaly, polymicrogyria, developmental delays, feeding issues, sensory issues, mild to moderate hearing loss, non verbal. She is 6 years old and weighs 31 lbs and her name is Luciana. She will always be on the small side but she’s doing amazing!
-Samantha Brennan (Rockland, MA)
Logan Michael Colleran was born on June 24, 2017, at 27 weeks gestational age and weighing 1 lb, 2 oz. Five days later Logan was diagnosed with congenital CMV and was given a 10-25% chance of survival. The next month was excruciating as Logan struggled to gain weight, was intubated several times, and received countless platelets and red blood cell transfusions. Despite this fact, Logan was a fighter and 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 became resistant to his medication and the virus 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 a very poor quality of life. We no longer felt it was fair to make him continue his fight, and decided to continue with comfort measures only. Logan passed away at just 4 months old. Not a day goes by that we don’t think of and miss him. We will always wonder what could have been, had we known about congenital CMV and its prevention.
-Vanessa & Peter Colleran (Oxford, MA)
Landon Anthony Anderson was born on March 16, 2016 with his umbilical cord around his neck. It took him a few minutes to breathe on his own because he aspirated during birth. He was somewhat jaundiced at birth and at one day old he failed his newborn hearing test and it was repeated the day after failing again once more. We were referred to Morton hospital for a more in depth ear exam where Landon was pronounced profoundly deaf. We decided to get a second opinion at Boston Children’s Hospital which is where he was tested for CMV due to his hearing loss, results came back positive and that was the beginning of our journey with CMV. Landon has had 5 surgeries in the past 5 years 3 being major. He is 100% gtube fed due to aspiration. Landon also has Spastic Quad Cerebral palsy, profound hearing loss, Epilepsy, Polymicrogyria, Cvi, non verbal and other developmental delays. Landon appeared normal on ultrasounds, and I had a perfect pregnancy. Being a first time mom this was really shocking, upsetting and scary. CMV was something I had never heard of or had been told about. It is something that really needs to be talked about and tested for so that pregnant women can take precautions to prevent it.
-Kelli Anderson, Buzzards Bay, MA
Dotty Wynn surprised us with an early arrival at 35 weeks gestation and earned herself a stay in the Special Care Nursery. The hearing test she received there showed significant hearing loss in one ear. That result would end up being a blessing in disguise. The hospital where she was born tests all children who have suspected hearing loss for congenital Cytomegalovirus (cCMV). It was that way that we found out that Dotty would need specialized services because she was positive for cCMV. As soon as she was discharged we were able to hit the ground running with the support of specialized physicians, Early Intervention, and local agencies. Today, Dorothy is thriving and we attribute her success to the early detection of cCMV. We are beyond grateful that the hospital’s policy ensured that we were educated about cCMV and gave us the head start needed to ensure the very best outcome for our daughter.
-Desiree & Lucas Sheppard (Lynn, MA)
I knew throughout my pregnancy that I possibly had CMV. I had a high-risk doctor who told me that the baby could possibly have the virus because the baby was measuring small and I was losing amniotic fluid. When I was tested for CMV they said I didn’t have an active infection, but the baby could have had it in the first 3 months and there would be no way to tell until the baby was born. The baby kept measuring small and I needed a cervical cerclage. Around 20 weeks my doctor recommended terminating the baby due to possible deafness, blindness, and life in a wheelchair. Aliyah was born on November 13, 2020, weighing 4.7 lbs. She was screened for CMV at birth with both a saliva and urine test. She came back positive and was able to start on antiviral medication. Aliyah failed her hearing test at the hospital and is deaf in her left ear. The doctors have also found CMV in her brain but we won’t know if it has affected her until she’s older. She has already begun early intervention and speech therapy at 1 month old. I wish that women were warned when they were first pregnant about CMV, especially if they spend time around babies or work at a daycare.
-Lena Antar-King (Dedham, MA)