CMV Spotlight: Catie and Max
Welcome to Sunshine and Shattered Dreams! I am so glad to have you.
My world for the last few years has been advocating, raising awareness about CMV. The only story I have been sharing is mine, which is not the only one out there. While it is the story I know best, it is the collection of heartbreak, shattered dreams, and then sunshine that changes the communities we live in.
This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents and families who advocate alongside them.
Samantha: I am so excited to have you! Please introduce yourself and your child.
Catie: My name is Catie and my son’s name is Max.
Samantha: Before your Max’s diagnosis, had you ever heard of CMV?
Catie: The only time I had ever heard it mentioned was about a year before Max was born. My sisters niece was very sick as a newborn baby and they weren’t exactly sure what was going on. My mother in law (who is a pediatric nurse) said Oh I hope its not CMV. We asked what that was and she said its just really bad-Just pray its not that.
Samantha: How did your journey begin? What was going through your mind?
Catie: Max’s story wasn’t the typical CMV Story (If there is even such a thing!) and is kind of long:
I had a mostly normal pregnancy. The only “hiccups” I had were I was sick the ENTIRE pregnancy and had to take Zofran until the day Max was born. (He just wanted to keep me on my toes from literally the very beginning! 😊) During our anatomy scan they found “bright spots” on his bowels aka Echogenic Bowel. We were sent to a MFM who ran every test under the moon. He tested for Cystic Fibrosis, Down Syndrome, and ran a TORCH panel, which tests for Toxoplasmosis, Rubella, Cytomegalovirus, Herpes Simplex and HIV. All these tests came back negative except for 1- Cytomegalovirus. This test showed that I was positive for a PAST Infection but negative for an active Infection. Doctors told me this is normal, and most people have had Cytomegalovirus by their 30’s and I had nothing to worry about.
On March 27, 2018 Maxwell (Max) Ryan Plaxco was born. He was 6lbs and 14oz and
was absolutely perfect, except for a petechia rash (which still made him super cute-It looked like red freckles!) Doctors told us this this rash was due to a traumatic birth (which it wasn’t at all). Everything in the hospital went smoothly- Max passed his newborn hearing screening and we went home 2 days later with what we thought was a perfectly healthy baby boy.
Fast forward to Max’s 1-month checkup at the pediatrician’s office. Everything looked great except for the fact that his head circumference was under the 3rd percentile. We were told he was fine and would catch up, but I couldn’t shake this gut feeling that something wasn’t right, so I started digging and researching. I pulled all my medical records from my OBGYN and MFM’s offices. No red flags except Max’s growth dramatically slowed down in the 3rd trimester which I thought was odd that I was never made aware of this. He was still in the normal range, so I guess that’s why it was never discussed. During this time Max started screaming 24/7 and hardly sleeping. We thought it was silent reflux since his older brother had horrible reflux. We put him on high doses of PPI’s and specialized formulas, but NOTHING worked. The screaming was constant, and his little body was always so tight- It always seemed like he was in pain. We even consulted with a pediatric GI who said he didn’t think it was reflux and took him off the medications. He told us to keep Max’s Head Circumference on our Radar- NO other doctor ever thought this was ever an issue. The screaming continued and around 5 months old Max started refusing to eat. There were days we could only get about 10-12 oz total in him and it was usually by syringe or he would take a few ounces from his bottle in his sleep.
I was constantly taking Max to the doctor and was constantly being made to feel as though I was overreacting and crazy all because Max LOOKED so normal, but I KNEW something was wrong. At 6 months old I took it upon myself to enroll Max into our states Early Steps program and by the grace of God, we got an AMAZING Occupational Therapist who also agreed with me that something wasn’t right. One side of his body was tighter than the other and his movements were spastic and ridged. His Head Circumference still wasn’t on the charts and he still wasn’t eating properly. Max’s OT typed up a report to send to his pediatrician stating why she thought Max needed to be referred to a neurologist immediately. Thankfully this did and trick and we were referred to a pediatric neurologist in Dallas. I’ll forever be grateful for our wonderful OT- without her, it would’ve been months-possibly even years before we would’ve found a diagnosis for Max.
In December of 2018 Max had a sedated MRI/CT of his brain which found damage indicative of a TORCH infection- Most likely Cytomegalovirus. Max has severe microcephaly (small brain), cysts, calcifications and abnormal white matter in his brain. He also has Polymicrogyria which means there are areas of his brain with too many small folds. Once we received these results, the neurologist referred us to an Infectious Disease doctor at Texas Children’s in Houston and we have since moved the rest of Max’s team there. From discussions with doctors, it looks like I most likely contracted Cytomegalovirus in my first trimester which is why the initial test after the anatomy scan came back saying positive for a PAST Infection. The TORCH Panel was run at 22 weeks pregnant. We’ll never know for sure exactly when I caught Cytomegalovirus though. The petechia rash Max was born with was a major red flag for a Cytomegalovirus infection (CMV), but the doctors missed it. CMV also tends to take hearing away from these kiddos, Max did pass his newborn hearing screening, but by the time we tested his hearing at 11 months old he had moderate hearing loss in his right ear. The damage in his brain puts him at a high risk for seizures, feeding issues that we still struggle with today, and global developmental delays.
Samantha: Tell me a little more about Max's conditions associated with CMV. At his age, how many specialists are on your team?
Catie: Max has a couple things going on because of CMV. First, he has moderate hearing loss in his right ear. He CAN hear without a hearing aid, but he does wear one (even though he pretty much hates it ha!) Being able to hear is so important for speech and language development and at his age this is critical right now.
Max has Polymicrogyria which is a brain malformation. This means that Max has an area of the brain with too many small folds which makes processing information that the brain receives difficult
Max has Spastic Diplegia Cerebral Palsy. This has caused Max’s body to be very tight and ridged. All 4 of his limbs are affected, but his legs are more affected than his arms.
Max has also had feeding difficulties since he was 5 months old.
Right now Max has his Pediatrician, Infectious Disease Specialist, Neurologist, Physical Medicine Rehab doctor, Immunologist, Gastro Intestinal Specialist, ENT, Orthopedic, Neurosurgeon, Audiologist & 3 Physical Therapists, 2 Occupational Therapist & 2 Speech Language Pathologists.
Samantha: What is your biggest fear for Max? Catie: My biggest Fear for my child is Max feeling left behind. He’s very aware of what other kids around him are doing and wants so badly to be able to keep up with them.
Another fear of mine for Max is seizures. He’s only had 1 in his life so far but seizures can be devastating for these kiddos. Its one of my biggest fears.
Samantha: What is your greatest hope for him? Catie: My greatest hope is for Max to live a healthy and happy and independent (however that may look for him) life.
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?
Catie: I’ve been blessed with wonderful supportive friends and family. They have been my rock throughout all of this. Our parents have been wonderful about helping us with the boys so my husband can have time to just get away from it all occasionally.
I also have one of my best friends who has walked this journey before me. Her son has Down Syndrome and while its different, the feeling that a mother has for their child is the same. Id be lost without her.
I also have become friends with other local moms who have special needs kiddos- its nice to just be able to reach out to those moms who just get it.
Another huge thing is I work full time- This put some normalcy back into my life. Our parents help us get Max back and forth from therapy so that My husband and I can both continue to have our careers.
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?
Catie: Unconditional love, PATIENCE- This one is huge! And to learn that I can’t control everything. Some things I just have to let go and give to God. But like the above states- JOY. Max brings us pure JOY every single day. He can light up the room with his smile. His strength and courage amaze me every single day. This little boy has been through more in 2 years than I have been through in a lifetime. He bounces back every single time stronger and more determined than ever before. This life is HARD, but I wouldn’t trade it for anything.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Catie: Max is the true definition of Joy, Strength, and Courage. “I praise you, for I am fearfully and wonderfully made.” Psalm 139
Oh my, Catie. What a beautiful story. I remember the day you messaged me, looking for hope and help. Needing that encouragement to go forward and keep your head up. You changed my path then as well.
Max is joy and hope, and I am so grateful I've been able to watch your journey!
If you would like to follow Catie and Max, visit them on Instagram at Catie3785.