CMV Spotlight: Margaret and Alexander
Welcome to Sunshine and Shattered Dreams! I am so glad to have you and am so thankful for your story.
My world for the last few years has been advocating and raising awareness for CMV, but the only story I have been sharing is mine. There are, unfortunately, thousands of stories out there, though.
So 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.
Samantha: I am excited to have you. Please introduce yourself and your child. Tell us a little about your family:
Margaret: Hello! My name is Margaret and I have a 7-month-old son named Alexander (Zander for short) who was born with cCMV. My husband, Michael, and I also have two other boys, Hayden (4 years) and EJ (2 years). We live outside of Cleveland, Ohio, where I’m a 7th grade math teacher and my husband is a chef.
Samantha: Before Zander's diagnosis, had you ever heard of CMV, how much did you know?
Margaret: Before my child’s diagnosis, the only time I had ever heard of CMV was after I had a TORCH screen done at 34 weeks. I knew it was one of the infections I was being tested for, but I didn’t know what it was or how you contracted it. While I was pregnant with Zander, my other boys were both in daycare. At that time, I was also potty training my oldest and my youngest was in diapers. I can remember sharing food with both of my boys. My youngest had just turned a year and he loved sharing ice cream with me and my oldest loved drinking out of my water bottle. Despite all of this, no one EVER said to be extra careful changing them and to not share food or drinks.
Samantha: How did your journey begin? What was going through your mind?
Margaret: We didn’t know that Zander had cCMV until he was 5 days old. But looking back, there were signs at my 19-week anatomy scan and the latter half of my pregnancy. During my pregnancy with Zander, there is only one time I can remember being really sick. I was about 12-13 weeks pregnant and I came down with what I thought was a really bad sinus infection. I had the most excruciating pain on one side of my face, I was super tired, and had an awful sore throat. I went to the doctor and after a few questions they put me on an antibiotic and that was it.
At my anatomy scan, the doctor came in and said they detected an echogenic bowel. He wouldn’t tell me why it was so concerning and kept asking if cystic fibrosis ran in my family or my husband’s. We kept telling him no. He suggested an amniocentesis, but without giving us a really good reason for having it, we opted against it. Instead, we decided to do all the noninvasive blood work and return in 4 weeks. Unbeknownst to us, Zander’s growth had slowed and he was about 2 weeks behind. We didn’t know this until the next ultrasound with a different doctor.
She informed us that he was only at the 6th percentile for growth (IUGR) and the echogenic bowel was still present. We returned for another ultrasound 4 weeks later and found out that the echogenic bowel had resolved itself. I remember crying tears of happiness thinking everything was going to be okay. At that point, the only thing they were concerned with was his size.
Unfortunately, the doctors just assumed he was going to be small since my other babies were small. I continued to go every two weeks for ultrasounds and at 34 weeks they found that his lateral ventricles were slightly dilated on the higher end of normal. Again, they weren’t concerned because they were still within the normal range.
It was recommended that I get a TORCH screen to rule out infection. Everything came back negative and I was told we had nothing to worry about. I continued to get ultrasounds every week plus non-stress tests at this point and was induced at 39 weeks. After laboring for around 6 hours, Zander’s heart rate kept dropping and they decided to do an emergency C-section. He was born weighing 5 lbs. 2 oz. with a slight petechiae rash. I remember hearing him cry and getting to see him for the first time. He was beautiful! He looked just like his older brothers and I was so thankful that we had both made it to the other side. I couldn’t wait to hold him and I couldn’t wait for my other boys to join us at the hospital to meet their baby brother.
I didn’t know it, but my placenta looked horrible and the doctor who delivered Zander, sent it for testing. We made it to my hospital room, but Zander wasn’t with us for more than 30 minutes before they sent him to the NICU because he wasn’t able to regulate his glucose levels. I remember thinking they’d make him better, he’d maybe be there overnight, and then we’d be back together again. How wrong I was. We went down to the NICU in the morning to see him and talk to the doctor during rounds. I remember the doctor saying they had done a head ultrasound because of the lateral ventricles and they found calcifications on his brain, his platelets were really low, they still couldn’t regulate his glucose levels, and he had failed his newborn hearing screen. This was the first time someone told us that his symptoms were consistent with cCMV. In the back of my mind I kept thinking, “That’s not possible! We were told that I was negative for it!” I remember going back to my room and Googling CMV. I sat there reading the range of symptoms we possibly faced and balling my eyes out. I was so scared and angry. How did we end up here? How could I have been getting so many ultrasounds and they missed this. HOW? I couldn’t wrap my brain around it. They did a urine culture and after 5 days, the doctor told us that both my placenta and Zander’s urine tested positive for cCMV. At this point we started him on a 6-month course of the antiviral, Valcyte. The day we found out was also the day that it was time for me to go home. Zander was still in the NICU and would spend 10 days there. My husband and I made the trip back and forth to the hospital multiple times a day while still trying to provide some sense of normalcy at home for our other boys. I felt like I was drowning. I wanted to walk away from all of it. The night we went home, we got a phone call at 5 am that they had moved Zander from the step down NICU back to the more intensive unit because he kept desatting and they were concerned he was having seizures. They did a 24-hour EEG and thankfully it came back normal. On top of the head ultrasound, they also did an MRI of his brain.
During rounds, the doctor shared the results with us. He kept shaking his head and saying it didn’t look good. I remember just staring at him. His mouth was moving, but I couldn’t process anything he was saying. When Zander was finally stable enough to go home, they did the newborn hearing screening one more time, but he failed it again. On the last day, our discharge nurse sat down with us to go over all the upcoming appointments we had: infectious disease, neurology, ophthalmology, ENT, audiology, PT, OT, speech, NICU follow up clinic, pediatrician, developmental pediatrician, feeding specialist, and dietician.
We went home feeling pretty numb, nothing like the way we felt when we brought home our other boys. I was barely sleeping or eating and would spend hours just watching Zander, waiting for “something” to happen. We were averaging around 21 appointments per month plus weekly blood draws to make sure the Valcyte wasn’t causing additional problems. When Zander was almost 2 months old, he spent 15 days in the PICU for RSV and then an additional week the following month for bronchiolitis. We had learned in December that Zander has bilateral sensorineural hearing loss (severe-profound). By then, it really didn’t come as a shock to us since he had failed the newborn screening twice and he didn’t seem to respond to our dogs barking or the other boys running around the house. As a result, he received his hearing aids at the end of February.
Around this time, we finally started getting into a routine with all of Zander’s appointments, only to have everything put on hold in March due to COVID-19. Our therapy appointments have all shifted to virtual visits, which are frustrating because our therapists can’t feel the changes in his muscles and development. We have been able to continue with our audiology appointments and ENT since he’s on track to getting cochlear implants around 9 months. In April, he had another MRI done to see if he’s a good candidate for cochlears. Everything with his ears looked good, but unfortunately, they found that his brain looked worse than it had on the MRI that was done in the NICU. Hearing the results sent me reeling for a good 48 hours. It literally felt like we had gone back to the beginning; all the feelings were there, hearing the newest findings. Lately we’ve noticed some odd shuddering like behaviors and he’ll be going in for a 48-hour EEG in June. This is just a snapshot of our journey so far and it’s only the beginning.
There are a lot of highs and lows and it requires a lot of patience, but the positives we experience are so worth it! Zander’s brothers have this amazing ability to make him laugh! I could spend hours watching them together, just listening to the giggles. And when he does something that you know he’s been working super hard at, it feels amazing to cheer him on.
Samantha: What secondary conditions does he have? What does a typical day in Zander's life look like?
Margaret: In addition to cCMV, Zander has bilateral sensorineural hearing loss that is severe to profound, he is delayed in his gross motor development (still not holding his head up consistently, not sitting up, rolled for around 2 weeks but has since stopped), low tone in his neck and trunk with high tone in his arms and legs, reflux, abnormal brain MRI with some damage to the occipital lobe but we don’t know the extent of it yet, torticollis, and a possible CP diagnosis down the road.
A typical day in the life of Zander starts off with us turning on his hearing aids and singing him a good morning song. After some floor time play, he usually eats and takes his reflux meds. Once he has had time to digest, we usually do about 45 minutes of PT, which includes stretching, massage, tummy time, working on sitting up, working on grabbing toys with purpose, rolling, and any other activities our therapists want us to work on. Some sessions are really good, and others can be challenging depending on his tone. Most days, except for the weekend, Zander has at least one appointment with either one of his specialists or therapists. We do our best to include Zander in whatever we’re doing as a family.
Our older boys love to sing to him and make him laugh and Zander loves joining them for story time or ASL videos. We just started solids, which has been pretty stressful. He seems to enjoy the foods we’ve tried, but it’s been a slow process and I’m always worried he’s going to start gagging or choking. At night, when our older boys go down for the night, Zander gets another full PT session with either my husband or me. I know we’re doing our best, and some days are better than others, but sometimes it’s hard when you feel like you could always be doing more to help him reach his full potential.
Samantha: What is your biggest fear for Zander?
Margaret: I have so many fears for Zander. I worry about the everyday things like meeting certain milestones and developing a sense of independence, but most of all, I worry that he’ll never have the opportunity to experience what it’s like to be in love.
Samantha: What is your greatest hope for him?
Margaret: I hope that Zander continues to fight the effects of this horrible virus and surprises everyone with his accomplishments.
Samantha: How do you take care of yourself? This journey can feel solitary, like you are in it alone even though you know there are many more out there fighting the same fight. Where do you turn to fill your cup?
Margaret: I’m still figuring this one out, but sometimes it can be as simple as having a cup of coffee with my husband in the morning before the crazy of our day begins. Nature walks, the occasional dinner with friends, and baking with my older boys seem to give me a sense of balance, too. I also think keeping my hair appointment every 10 weeks is really helpful, because it allows me to step away for a moment to take care of myself, while talking to someone about everything and anything at the same time.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Margaret: We’re still in the beginning stages of our journey with Zander, and everyone’s journey will be different, but one piece of advice a NICU doctor shared with us was to take him home, love him, and enjoy him, just like we did with our other boys. It’s so hard those first few months. There’s so much uncertainty and you can oftentimes feel like you’re walking in a fog. But the victories, even the small ones, will feel SO huge! Find another special needs parent who understands, especially if their child also has cCMV. You will want them as a resource and for the support.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Margaret: I read an article recently that really spoke to me. The one lesson that stood out the most was…
“It’s a waste of energy to import our imagined troubles of tomorrow that aren’t even true or real yet.”
Thank you, Margaret. I know the feeling of looking back and thinking, "I know when it happened." and being so angry that no one was doing anything.
Zander is adorable (and so are his brothers!) and he already has a powerful team that will love him through this no matter where it leads. I truly think that our older siblings will be the heroes of the world because they live such a different life. They have hearts that flow with compassion and kindness.
To learn more about CMV and ways you can get involved, please visit the National CMV Foundation.
To make a donation to the foundation in Zander's honor, please visit here.