CMV....The Scariest Thing You May Never Have Heard Of

Febuary 2010

Well, I lasted about only a week of Russ knowing the gender of our baby and my staying "surprised". James Rhys Haskin is due July 7, 2010 and we are hoping for a healthy, baby boy. We were both very excited to find out that we will be adding another little boy to our family, and loving how close in age Drew and Rhys will be. Hopefully they will be best buds:)

However, to quote my husband, who put it so eloquently, Rhys "is not even born yet, and he already has to fight". I have had the dumb luck of getting infected with CMV, or cytomegalovirus, for the first time during the beginning of this pregnancy. This is a VERY common virus and most people our age have already had it. If you work in healthcare or are around little children, or both as in my case, you are almost guaranteed to have already been exposed to it. Not me, I guess. They screen you for syphilis when you are pregnant, but not CMV. Maybe that is because you can usually avoid syphilis, but not this virus. This whole thing started almost 2 weeks ago when they saw that the baby's bowel was more lit up on the ultrasound than it should have been. The doctor who performed our scan stated that this can be a normal finding 99% of the time, but sometimes it is associated with Down Syndrome, Cystic Fibrosis, a bleed, or an infection. The infection she worried the most about in Rhys, given my occupation and the fact that we have Drew, was CMV, so I went ahead and got tested. Although no one wants to see anything wrong on their ultrasound, I had seen many babies born normally with some small ultrasound abnormalities in their bowels and never thought twice about it. I assumed that I would fall in that category as well.

We found out yesterday afternoon that I have/did have a primary CMV infection during this pregnancy and I had an amioncentesis performed this afternoon to find out if Rhys has it in his system as well. The Pediatric Infectious Disease specialist at MCV is quite confident, unfortunately, that Rhys will have the infection and that the amniotic fluid that they collected will be positive for CMV. Although there are some risks to having an amnio, I believe that the procedure went well. The doctor who did it was very experienced, kind and able to put me at ease. I am laying flat on my back as we speak for the next 24 hours to limit any leakage of amniotic fluid. Russ is also thankfully at home and being a great Mom and Dad tonight.

Babies who have a congenital CMV infection have a 10-15% chance of being affected by it. Affects include low birth weight, having a small head, prematurity, hearing loss that is progressive, visual changes, and worst of all, mental retardation. The more things they see on prenatal ultrasound, the more likely that the baby will fall in the 10-15% who have these affects. Thankfully, MCV just happens to have a world renowned doctor who has dedicated his life's research to CMV prevention in babies. There is a treatment that is available as a result of his research to help Rhys fight this infection. The treatment is an IV immune globulin treatment, so I am assuming I will need to be in the hospital or clinic to receive this medicine when the time comes. We hope to get the results of the amniocentesis back on Thursday at my OB appointment, meet with this researcher, and get started on some treatment. In the meantime, we hope and pray that Rhys is as much of a fiesty little guy as I was as a child and that he fights like hell to clear this from his system before any significant damage results.

Russ and I are both shocked, scared and overwhelmed by this turn of events. Yet, we are hopeful and know that we just need to take what life hands us and make the best of it. We are very thankful to be in such great medical hands, and to be able to get everything handled so expediently. We are also so thankful for our wonderful families and friends who have continued to offer us such great comfort through the years. Please keep Rhys in your thoughts and prayers and thank you for your upcoming love and support.

September 2010

We are so so thankful for our little baby boy and for his wonderful addition to our family. Like most parents, we are just adjusting to having two little men to care for, but we have also been taking care of Rhys's medical needs. Rhys was thankfully born at term and looked great at birth. The poor little man had to have a series of tests performed in the hospital, including a spinal tap, head CT, lots of blood tests and hearing tests. It was a very emotional time for both Russ and I, and a very grueling couple of days for Rhys. Thankfully most of Rhys's tests were normal, including his head CT, which helps decrease his odds of cerebral palsy or mental retardation significantly. It seems as if his only ill effect from the CMV is deafness in his right ear. Of course, the doctors are going to continue to watch him very closely, but "he looks as good as he could look". Russ and I both felt as if we have dodged a big bullet with this virus, and are so thankful for the blessing that we were able to bring home to love and care for.

Children can learn to speak normally with only one hearing ear. However, the CMV can still affect his hearing in his good ear up until the age of three or four! We were advised by the Pediatric Infectious Disease specialist and the Ear Nose and Throat doctor to give Rhys six weeks of an antiviral medication called ganciclovir in the hopes that it would help prevent further hearing loss in his left (good) ear. The research studies on ganciclovir were small in number, but with encouraging results. Unfortunately, we would need to give this medication through an IV line that channeled into the top of his heart, requiring surgery and the risk of infection. On top of that, the ganciclovir has a known side effect of decreasing your white blood cell count, thus making you more at risk for serious infections. It was not a decision that we took lightly, and it was the first time that Russ and I had to make an important decision for one of our sons....not easy.

Rhys received his central line when he was 9 days old and had to have general anesthesia and a breathing tube. Thankfully he did much better than the doctors expected (they obviously do not have much experience operating on healthy babies) and we were able to bring him home that day. The home health agency came out the next day and showed us how to give the medication, change his dressing, and draw blood off of the line. Being a NICU nurse has come in handy, as all of this was pretty familiar for me. It was actually really easy and did not really interfere with our day too much! Rhys received his hour long infusion of medicine in the car seat more than once:) The home health nurse was very sweet and would check on us every week. The Pediatric Infectious Disease doctor is amazing and would either text or facebook us with his blood results. She really took such great care of us and went out of her way time and time again to help us feel at ease. They even enabled us to make it to the beach; we just FedExed the blood work from Corolla, N.C. and changed his dressing in the beach house kitchen! The only real side effect, other than the dip in his white blood cell count, was all the extra diapers the extra fluid in the medicine caused....Rhys is NOT a fan of wet diapers:) Of course we have been pretty paranoid about infections and germs, but not too much more than any other parent of a newborn would be.

Rhys had his central line removed on the Friday before Labor Day in the surgeon's office. I never realized how careful we were being in picking him up, bathing, feeding, etc. until we did not have to be....Although I have been trying not to think of him as "sick", I must have been a little bit, because he now seems so much healthier without that silly line in his chest. We have all just relaxed a bit more:) He is smiling and cooing and starting to play with his toys, and it is just so reassuring and amazing to see. It is so scary to think that this one little virus could have wiped out his hearing in his right ear completely...and to think of what else it could have done. I hope that we will be able to share Rhys's story to increase awareness and funding for a vaccine so that other families and children do not have to be handicapped by this little three letter virus.

Rhys will continue to be followed very closely with Early Intervention Services, speech therapy and hearing tests every 6 weeks. We take him in on Wednesday for his first hearing test after his treatment and are eager to ask the ENT doctor some questions now that the news of his deafness has had time to settle in.

We can not thank you enough for all of your prayers and support. It has really helped us through some scary times during the pregnancy and during his first few days of life. We can't wait to share Rhys with you all-he is just the sweetest little boy! We are so blessed to have such wonderful friends and family, and again, we can not thank you enough.