Superheroes for CMV 5k Walk

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

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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)

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Holden James Keenan was born on April 11, 2020, at 3:23 AM at 30 weeks and 4 days gestation. Holden passed away at 5:59 AM the same day. At my anatomy scan the doctor said my baby had fluid in his stomach and requested I get an amniocentesis, which unfortunately came back as positive for CMV. From this point on we had countless appointments: MRIs, blood work, sonograms, a procedure where a 22 gauge needle is placed into my uterus and his stomach to drain the fluid, all in hope his lungs would continue to develop. I also started taking Valganciclovir. I knew the odds were not in his favor when they found it mid pregnancy. My doctor said he had a 5% chance of survival in the womb and didn’t think he would survive delivery. At my 30 week appointment my doctor was shocked that he was still kicking, moving with normal heart beats. 4 days later he was born, then later passed. The doctors did all they could to save him but he was almost 100% reliant on oxygen. I know he is no longer in pain and at peace. I wish I knew about CMV and had testing so this could have been prevented and my son could have been here with me today.

-Amanda Keenan (Natick, MA)

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Our family’s journey with congenital cytomegalovirus has been somewhat different than many we’ve heard. An abnormality was detected on the ultrasound the day we were set to learn Aedan’s gender. It was at that point we were given a list of diagnoses it could mean, while also told it could be nothing at all, suggested to see a geneticist, and asked to select which testing we wanted based on that information— a whirlwind, to say the least. After educating ourselves on CMV because we had never heard of the virus, we learned that my risk for it was high because I was a preschool teacher. I was tested and it was concluded that I had CMV during my first trimester. Aedan was born healthy, just four days shy of his due date. He failed his hearing screen at the hospital and remains partially deaf, but we were aware that it was a possibility. With such early knowledge, we have been able to give Aedan every single opportunity for success with specialist interventions from the very start. Congenital cytomegalovirus is a crushing, devastating diagnosis for so many families. Perhaps if more emphasis was put on the severity of it, how easily it is contracted, and the simple prevention measures during prenatal care, we could see a dramatic decline in cases. For now, let’s start by giving cCMV babies a fighting chance with universal screening at birth.

-Amanda & Tim

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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

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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)

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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)

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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.

-Eliza