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Rhys' Story
"We found out that Rhys had congenital CMV right around Valentine’s Day..."
I had had an otherwise normal pregnancy so far, albeit with some increased nausea, fatigue and moodiness. All of this we attributed to my chasing around after our older son, Drew. At our routine 19 week ultrasound, the doctor noticed an echogenic (or bright) bowel. She reassured me that it was probably nothing, but that it could be a sign of an infection, a bleed or a genetic issue. Since I work in a newborn nursery at a hospital, she stated that the infection she would worry about with me would be CMV, and she encouraged me to get tested.
Having worked in healthcare and around children for 15+ years, I never imagined that I had never had CMV before so I wasn’t too concerned about it. It was pretty shocking when the lab work came back indicating that I had had a primary infection either at conception or shortly thereafter. Thankfully I was receiving my prenatal care at Virginia Commonwealth University Health Systems, who just happens to have a world renowned CMV researcher on staff. I met with him right away and was scheduled within the week to have an amniocentesis to confirm the infection and then a Cytogam infusion to help boost my immune system and limit the effects of the virus on our unborn son. We were quoted odds of 15- 20% that our son would be affected from the virus, with affects ranging from mild unilateral hearing loss to death. It was a lot to sort through and stomach. Throughout the pregnancy, I was monitored closely with ultrasounds every 2 to 4 weeks. They kept seeing the bright bowel, but thankfully never saw any other associated findings. At one point the doctor saw some “fuzziness” in his brain that supposedly was not known to be related to CMV, but it still scared us. Due to this unknown finding, we decided to do another Cytogam infusion, even though we were not sure if it would help or not.
Throughout the pregnancy, many of my coworkers and friends commented that I was “handling this so well” and that I was “being so positive.” What those closest to me realized was that I was in denial. I knew that we would be able to handle whatever outcome, but I just chose not to dwell too much on it. I told myself that I needed to stay positive, because my mood might affect Rhys’ development. I wondered if by thinking positive, I could force a positive outcome. The ultrasounds were hard to handle because we always heard, “your son looks great BUT…..”. We asked to space them out more at one point given the anxiety that they caused us. Thankfully we were busy with our two year-old and the pregnancy went by fairly quickly.
Reality did start hitting me as my due date neared. Around 37 weeks I began panicking, wanting Rhys to be born so that we could just KNOW. I knew that he had all these tests ahead of him and we were getting impatient for some answers. I also knew that my placenta was infected, and I just wanted him out and safe. I started to try anything to get him to be born, but alas he decided to arrive one week late.
James Rhys was born on July 14th, 2010 at 1:20pm. His birth was beautiful and his birthday will always be a day that I will remember and cherish forever. He weighed 7lbs 8 oz and was alert from the beginning. My husband Russ and I were so excited to see him, hold him, and protect him. He is just so special to us, and to see him with ten fingers and ten toes doing everything that a newborn should was wonderful. He didn’t have any tests done that day, and we were able to relax together as a family. His big brother, Drew, arrived for a visit that afternoon and we were so proud to be together. I remember wondering how I could be so blessed to have these wonderful men in my life.
The next day was a busy day. Rhys had a spinal tap, hearing test, eye exam, head CT and a lot of blood work performed. Multiple specialists met with us throughout the day, and it was frustrating after waiting for several months to not get many clear cut answers, as some of his tests were just a bit off. He had his hearing tested multiple times, but he never did pass in his right ear. Thankfully his head CT was completely normal, with no “fuzziness” seen. After 48 hours of meeting with doctors and trying to make decisions, we left the hospital and were so happy to bring our sweet baby Rhys home.
Rhys has had a few medical procedures and issues in the past 15 months. At 9 days of age he had a surgical line placed so that he could receive 6 weeks of gancyclovir to help protect his hearing in his good ear. At 8 months of age he had tubes placed in his ears to prevent fluid from building up and making his hearing worse in his good ear. He started physical therapy at 4 months of age for a gross motor delay, but was just discharged from their service after he stared walking at 15 months. Rhys is very small, with his weight on the 2nd percentile, so he has had some work-ups for his failure to thrive.
The doctors have given up on trying to find a cause for why he doesn’t eat, determining that he is just going to be a small little guy. His hearing continues to be perfect in his left ear, and our ENT keeps reassuring us that he only needs one hearing ear. He is on target, if not ahead of the game, verbally and we are thrilled at his little words and sentences.
I hope that one day an effective vaccine will be developed, so that other families will not go through the stress and anguish of CMV. Until that day, I encourage all women who might be pregnant or thinking about getting pregnant to learn more about CMV, how to prevent it, and the medical options you have if you get a primary infection.
I wish I could put into words how amazing Rhys is. He has such personality and drive in his little body. When he talks, he lights up the room with his sweet voice. He is determined and smart and always getting into trouble around the house. He loves animals, parties, music and water. He is so proud of how he can walk (as are we!) He talks up a storm and makes sure that we understand what he is trying to communicate. He loves to smile, laugh, and people often say that they have never seen such a happy baby. I can’t imagine our family without him, and I know that he will continue to amaze us.
Russ and I call him our Little Fighter, because he is just that. We are so thankful for our boys and wish to offer hope and compassion for others with CMV-affected children. We are so thankful for the medical care that we received: the prompt diagnosis, the prompt treatments, and the love that they showed our family as we gave birth to Rhys. From 19 weeks of pregnancy through now, Rhys and I have had the best treatment available. We believe that this early diagnosis and the subsequent treatments just may have made all the difference in Rhys’ outcome.
Thank you for reading Rhys’ story.
- Shared by his mother, Laura