CMV Spotlight: Alex and Sam
Welcome to Sunshine and Shattered Dreams! I am so glad to have you.
My world for the last few years has been advocating. The only story I have been sharing is mine, which is not the only one out there.
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: Introduce yourself and tell us a little about your family.
Alex: My name is Alex Pudwill and I am a nurse anesthetist from Sioux Falls, SD. My husband, Andy, is also in healthcare and works as a respiratory therapist. We have two sons, 2.5 year old Charlie and almost 7 month old Sam. Our son, Sam was born with CMV.
Samantha: Before Sam's diagnosis, had you ever heard of CMV? Alex: Having worked in healthcare for just under 10 years, I am almost embarrassed to say how little I knew about CMV. When Sam was born and the neonatologist told us he appeared to have the textbook symptoms for congenital CMV, I had to think hard to remember what, if anything, I had learned in my schooling. The only thing I could come up with was that if often resulted in hearing loss. That was all I could remember. And it had never been brought up during either of my pregnancies, not even once.
Samantha: How did your journey with Sam begin? What was going through your mind? Alex: Our journey began on Sam's birthday, October 13, 2019. I had gone in Saturday afternoon because, even though I was just under 36 weeks pregnant, I felt as though I was going into labor. Up until this point, everything during my pregnancy had gone well. A perfect 20 week ultrasound and uneventful prenatal visits. This is why my husband and I thought it was strange I would be going in to labor now a month early.
Our little guy was born Sunday morning at 4:17am, 5lbs 12oz and 18.5 inches long. They laid him on my chest and almost immediately took him away. The NICU team had been there anyway since I was more than 4 weeks early. That's when our neonatologist came over and started to describe this rash, petechiae and something she called a "blueberry muffin rash." She also said that his liver and spleen felt large. I was still somewhat out of it considering I had just given birth to what I thought would be a healthy baby boy, so I really didn't know what to think right away. My mind raced in every direction as they took my husband and our little man to the NICU. I didn't get to see him again until over 3 hours later because they had such a hard time removing my placenta. It had started to "scar" onto the uterine wall, which gave me even more reason to worry about how this virus may have affected my baby.
Samantha: Tell me a little more about his conditions associated with CMV. At Sam's age, how many specialists are on your team?
Alex: Sam was born with an enlarged liver and spleen, petechiae and a blueberry muffin rash covering his body, low platelets, undetectable blood sugar, and small bleed into the left ventricle of his brain. He required so many blood products (mostly platelets) that he developed a large PDA (hole in his heart) that the cardiologist did not expect to close on it's own and pulmonary hypertension. Because of this, we weren't able to start any actual feedings until he was 20 or so days old. This in turn caused his liver to not function properly and some of the higher liver function numbers our doctors had seen. By discharge, his PDA had miraculously closed and his feeding was all his own, taking down bottles like a champ. His liver enzymes improved as well.
We had been noticing all along that he did not seem to respond to loud noises, but only when he failed his newborn screen did we know for sure that the CMV had affected his hearing. We later found out after his ABR that he had bilateral severe hearing loss and would require hearing aids.
At one point, we had the NICU team, GI, cardiology, hematology, infectious disease, audiology and ENT, and PT/OT all on Sam's healthcare team. Right now we are down to audiology and physical/occupational therapy. He has come a long way from the sick little boy he was when he came out. My husband and I hate to think how much worse he may have been had he not known to ask for help and stuck around until his due date in November.
Samantha: What is your biggest fear for him? Alex: My biggest fear is that he will feel "different" from other kids his own age. Since this is very much the beginning of our journey and we don't know exactly where this road will lead us, I want him to know that different is ok. I want him to know that different is special and that no matter who he grows up to be, that he will always make his family proud.
Samantha: What is your greatest hope? Alex: My greatest hope goes hand in hand with my greatest fear... I hope that as he grows up, he takes what makes him different and brings it to life. I hope that he can embrace every bit of himself and show it off!
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? Alex: I have dealt with a lot of guilt throughout it all. Guilty in how I didn't know more... guilty in not being more careful, especially with my two year old at home... guilty in not knowing sooner. Luckily, I have had my husband and family by my side from the beginning. They have forced me to take a step back and enjoy the little things I most likely would have missed if I were on my own. Things like Sam's laugh. My cup is filled each and every time that little boy laughs. It is such a chuckle with the biggest, cheesiest grin on his face. No matter the day, it is impossible not to smile when he is happy.
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? Alex: It's incredibly easy to get caught up in all the medical parts of it. Working in healthcare, I am very much a "need to know" type of person. Like, I need to know how Sam's hearing is going to effect his speech and language development? Are the hearing aids enough or should I start looking into cochlear implants? I need to know, how the damage from Sam's brain bleed is going to effect his development?
Should I be looking into more therapies? Will he have seizures some day? I have never been a person who is content with not knowing, but now I have to be. Every child born with CMV is different and no matter what the doctors tell you, they don't know how your child will be affected. Only your child can tell you that. So love them and let them make their own milestones. Celebrate every little victory you can!
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today? Alex: "Today you are you, that is truer than true. There is no one alive who is youer than you." Dr. Seuss
Thank you so much, Alex, for sharing your story. Sam seems like a fighter, and he has a great team on his side to help him along!
To learn more about CMV and ways you can help raise awareness, please visit the National CMV Foundation.
If you would like to make a donation to National CMV in honor of Sam, please visit here.
"Love them and let them make their own milestones."