CMV Spotlight: Jennifer and Rocco
Spotlight on CMV
Welcome to Sunshine and Shattered Dreams! I am so glad to have you here to share your beautiful journey.
My world for the last few years has been advocating, shouting about CMV from the rooftops. The only story I have been sharing, however, is mine, which is not the only one out there. There are (unfortunately) many other families who have gone before us and will come after.
This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents who advocate alongside them. This is just 1 of them...
Samantha: I'm so pleased we can share your story today. Please introduce yourself and your child:
Jennifer: Rocco was born into our family 3 weeks early on September 25, 2019. Rocco was born asymptomatic, so he did not show any signs of congenital CMV or any other medical condition. Rocco was born perfect in our eyes, blonde hair, blue eyes, chubby cheeks. Little did we know all our hopes and dreams for Rocco were soon going to change 4 months later when we got the diagnosis of congenital CMV. My husband and I also have a 2.5 year old son, Colton, who is a rambunctious toddler always keeping us laughing and on our toes. I am a middle school science teacher, and one of my favorite topics to each about is the human body systems especially the nervous system. Let’s just say my basic understanding of the human nervous system has been beneficial when it came to receiving Rocco’s diagnosis and reviewing his MRI. My husband is a police officer, who has now taken over the role as “bread winner” of the family since Rocco's diagnosis.
Samantha: Before Rocco's diagnosis, had you ever heard of CMV?
Jennifer: The day we received Rocco’s diagnosis was the first time I had ever heard of CMV. I still remember the day vividly. When Rocco’s neurologist told us he had contracted cytomegalovirus in-utero, I said “HUH?!” The doctor’s assistant then walked over to the white board in the hospital room and wrote it out on the board with a black marker. I remember looking at it and trying to pronounce this foreign word over and over again in my head. What is this virus that infected my son and attacked his brain? Why had I never heard of it before? I was never warned!
Samantha: How did your journey begin? What was going through your mind?
Jennifer: Rocco was born with congenital CMV, but was not diagnosed until 4 months of age.
For the first 2.5 months of his life he was in my arms, never wanting to be put down and basically only wanted to be held by me. He fought off RSV, and numerous colds, so I figured he just always wanted to be comforted because he was always sick. By the time Rocco was 3 months old he was in better spirits, alert, and tolerated being put down on his play mat. This is when I noticed he was not achieving his developmental milestones.
I brought up my concerns to his pediatrician regarding his head control, head tilt, not bringing hands to his mouth or midline, and some muscle stiffness. The pediatrician was also concerned and recommended physical therapy.
We went to the PT for his head tilt (torticollis) and she also brought up other concerns she was seeing, but told me it was too soon to be really concerned ,since it was her first time meeting him and he was still young. I went into complete mom panic mode knowing something was not right and made a neurology appointment two hours later thanks to a cancellation.
The neurologist said to me “I am very concerned” and I knew it was bad. I felt like his muscles were having more spasms when he was falling asleep which could possibly be seizures and I wanted answers.
Two days later we took him to the ER at CHOP in Philadelphia hoping they would perform the MRI and EEG earlier than originally scheduled. Thankfully, they saw the need for earlier testing and admitted us with the EEG starting that evening.
The next day we had an early morning MRI and received all the results by that afternoon.
The doctor showed us the MRI of Rocco compared to an MRI of a typical infant. Rocco’s MRI had half the amount of brain matter, and more fluid than a typical brain. She said “I don’t want to say he will never be able to walk, because I’ve seen it happen, but most likely he will be severely mentally handicapped”. The EEG did not pick up any seizure-like activity, however, since there is so much fluid around his brain the seizures may not have been picked up by the EEG. It was determined that at some point during the first trimester, before the 20 week ultrasound ,his brain stopped developing at a normal pace, this is why he is barely hitting any newborn milestones.
After receiving Rocco’s diagnosis in the hospital and hearing everything he would never been able to do my heart was shattered. I felt like he was a curse to our family. All my dreams for him had been shattered. He was supposed to be able to run around the back yard and play with his older brother, he was supposed to play sports, he was supposed to go to college, get married and have a family of his own. He would have been a “normal” boy if this virus did not attack his brain and take my son away from me. I was angry, scared, frustrated, hopeless, and at times, I still am.
Samantha: Tell me a little more about his conditions associated with CMV. At Rocco's age, how many specialists are on your team?
Jennifer: Congenital CMV has led Rocco to also be diagnosed with Cerebral Palsy Dystonia, Diffuse Bilateral Polymicrogyria, Severe Microcephaly and Ventriculomegaly.
Rocco has a team of doctors from the Leukodystrophy Department at CHOP who follow him and check up on him every 6 months. He also has a pediatric neurologist/neurodevelopmentalist, and physiatrist who keeps a closer watch on Rocco’s neurological conditions, development and muscle tone. He has 3 different Physical Therapists, who we see three times a week. One Occupational Therapist, who we see once a week. We will also be adding a physiatrist to his team next month. Every 6 months Rocco is also followed up by a pediatric opthomologist and audiologist to keep close watch for any decline in vision or hearing.
Samantha: What is your biggest fear for Rocco?
Jennifer: My biggest fear for Rocco is that his quality of life will deteriorate as he gets older. As with any baby born with congenital CMV, they are known to have a shorter than normal life span, especially those who are considered severe like Rocco. Right now Rocco is not medically needy, but as he gets older I know hospital trips will be more frequent and that is something that is very nerve wracking and upsetting for any child, parent, and family. While as a mother, I want to be positive for my son, I also have to be realistic, and that comes with being fearful of what the future holds for Rocco and our family. I just hope that Rocco stays the same happy, loving little boy he is now no matter what life throws at him.
Samantha: What is your greatest hope for him?
Jennifer: My greatest hope for Rocco is that he is able to live life to its fullest in spite of his developmental delays. I want him to be included in as many family, community, and educational activities as possible. Rocco may be trapped in a body whose brain sends his muscles mixed signals, which in turn does not allow him to move the correct ways, but he has feelings, likes and dislikes, and many opinions.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Jennifer: “A child is like a butterfly in the wind.
Some can fly higher than others,
But each one flies the best it can.
Why compare one against the other?
Each one is different.
Each one is special.
Each one is beautiful.”
Thank you for sharing with us, Jennifer. That day of diagnosis is one that I feel like gets etched into our memories. The world stops spinning and the air gets thin. I can remember is like it happened today.
We heard the same hard news, that Hank may never do all of these things. And while he might not be, there are many things he does that I am grateful for. Rocco has a beautiful support team and that will take him far. Breathe deep and know that you are doing amazing, Momma!
To learn more about CMV, please visit the National CMV Foundation.
If you would like to make a donation to the Foundation in honor of Rocco's Fight, please visit here.