Our CMV Story

This is a loooong post about Miss Kaitlyn and her virus. Please take the time to read it (read it in segments if you need to). Especially read it is you are pregnant or will ever be pregnant again. Also, there is a poll to the right, I'm curious to see how many poeple had heard about CMV before Kaitlyn was born.

Cytomegalovirus (si-to-MEG-alovi-rus) or CMV is a very common virus that most people (around 80-90%) will contract at some point in their life. Most infections are "silent" and you usually never have any clue that you are infected. In a child or an adult with a healthy immune system, the virus is generally harmless. The problem arises when a women contracts CMV for the first time while she is pregnant.

A primary infection in a pregnant women occurs in about 1-3% of all pregnancies. Once the virus is in the mother, there is a chance that it will be passed along to the fetus. This happens in about 30-40% of primary infections. It is estimated that about 1% of all babies are born with Congenital Cytomegalovirus (cCMV). The vast majority (90%) of these babies will have no symptoms at birth and will go on to live completely normal lives. Since hospitals do not routinely screen babies for cCMV (although they should!), parents usually have no clue that their child is infected with the virus. It generally does not cause problems in the asymptomatic group but about 10-15% will have varying degrees of hearing loss. A small percentage of babies born with cCMV (about 10%) will have symptoms at birth and will be at a high risk for hearing loss, vision loss, and poor brain development. There is a 20% mortality rate for babies in the symptomatic group.

Our sweet Kaitlyn is part of the .1% of babies born with symptomatic Congenital Cytomegalovirus. Some of Kaitlyn's symptoms include thrombocytopenia (low platelets), petechiae (bleeding under the skin that looks like a rash), intrauterine growth restriction (low birth weight--she stopped growing at about 32 weeks), splenomegal, (enlarged spleen), slight hepatomegaly (enlarged liver), and the real kicker--blueberry muffin spots (small bruises under the skin).
---Did you know I can actually say and define each of the words above? Pretty good for a girl with a degree in sociology!

Pictures of Kaitlyn soon after birth. Click on the top picture to see the petechiae

You cannot "cure" congenital CMV. Once a virus enters your body, it is there forever (well, until you die). Kaitlyn is currently on an anti-viral to help her body shed virus and get it into a dormant state. Until this time, she is still contagious. A little about that...Kaitlyn is actively shedding a virus that you do not want to get if you are pregnant. If you are around her, and are pregnant, you should be careful. You should wash your hands if you change her diaper and be cautious with any body fluids . I want to note though, she is no more contagious than any other child that has the virus--and a lot of children do. You should be just as careful around all children (especially your own) as you would be around Kaitlyn. The only difference is that we know for sure that she has the virus. Mostly likely, Kinsey picked the virus up at nursery and passed onto me at home. Mothers with young children (usually toddler aged) are the mostly likely group to give birth to cCMV babies. White, middle-class, college educated mothers to be exact because they are the least likely to have been exposed to it growing up. I would bet money that I got it by sharing food with Kinsey. If you are pregnant, don't share food/drinks with your kids. Just don't. Avoid it like you would avoid eating raw eggs or changing a litter box. The biggest problem with CMV is that it is so unknown. And yet, it is far too common. The CDC recommends the following...

1. Practice good personal hygiene, especially hand washing with soap and water after contact with diapers or saliva (particularly with a child who is in day care). Wash well for 15 to 20 seconds.
2. Do not kiss children under the age of 6 on the mouth or cheek. Instead, kiss them on the head or give them a hug.
3. Do not share food, drinks, or utensils (spoons or forks) with young children.
4. If you are pregnant and work in a day care center, reduce your risk of getting CMV by working with children who are older than 2 ½ years of age, especially if you have never been infected with CMV or are unsure if you have been infected.

It's frustrating to know that I did all that I could to have a healthy pregnancy. I don't drink or smoke and I took all the precautions I had been warned to take. Very few OB's warn their patients about CMV because of its perceived rarity. Please take precautions--trust me, cCMV is not something you want to experience.

As for Kaitlyn, she is doing really well, all things considered. The medication she is taking, valganciclovir, is reserved for the most severe cases of cCMV. It is a toxic carcinogenic that only warrants use on the sickest of babies. Kaitlyn will be on it until she is at least 6 months old. It is scary to put a potentially harmful substance in my tiny baby, but it really is working a miracle. Kaitlyn was a very sick baby when she was born but she is improving each day as we kick the stupid virus out of her body. When I look back at pictures from Kaitlyn's first few days, I can see how sick she looked. She looks sooo much better now! She pretty much looks and acts like any healthy 2 month old, except she is small.

Hearing loss is the most common sequelae of cCMV and there are three symptoms that best predict hearing loss; intrauterine growth restriction (check), petechiae (check), and a viral load greater than 10,000 (check, Kaitlyn's was 16,000 at birth). Last week, Kaitlyn was diagnosed with uni-lateral hearing loss. While she can hear just fine out of her left ear, her right ear has moderate-severe hearing loss. With CMV, hearing loss is generally progressive. Once it starts to go, it usually goes all the way. However, the anti-viral she is on has been shown to preserve hearing in some studies. Our prayers now are that the hearing in her left ear will remain the same and she will not experience any new loss in her right ear.

As for the rest of Kaitlyn's development, we are playing the "wait and see" game. The horrible thing about cCMV is that every case is different and there are no guarantees. Check out our list of possibilities...

• Hearing loss
• Vision loss
• Mental disability
• Feeding issues/Failure to Thrive (FTT)
• Sleeping issues
• Sensory issues
• ADHD/Autism
• Small head/small brain (Microcephaly)
• Intercranial Calcifications
• Cerebral palsy
• Seizures
• Death

Right now Kaitlyn is doing beautifully. Our doctors and specialists keep telling us to "stay hopeful." We know that the virus entered her central nervous system (not a good thing) but the damage at this point seems minimal. Again, we just have to wait and see...

Bottom line is this...cCMV is our new reality. We've accepted it and will deal with the challenges that arise because of it. However, I hope that this post, and future posts, can help to raise some awareness about this condition. Some doctor's routinely screen pregnant women to see if they test positive for CMV (meaning that you have been exposed to the virus at some point in your life). If you test positive, your baby is at not at risk for cCMV (well, that's not exactly true, a virus can flare up and act like a primary infection but this is very, very rare and would most likely cause an asymptomatic infection; seriously, viruses suck). If you test negative, then you know that you need to take precautions. You don't have to go overboard, but you should be cautious. If your doctor doesn't test for CMV, you can ask to be tested or simply act like you tested negative and take the necessary precautions.

I wish I had known. I'm not sure if it would have changed Kaitlyn's outcome or not. Mostly I feel like this was meant to happen, for whatever reason. We'll love our little girl no matter what. It's hard to know that she will likely struggle though her life, but I take comfort in knowing that all will be restored in the next life. It take comfort in these words by President Faust: "Certainly, in the infinite mercy of God, those with physical and mental limitations will not remain so after the Resurrection. At this time, Alma says, “the spirit and the body shall be reunited again in its perfect form; both limb and joint shall be restored to its proper frame.” (Alma 11:43.) Afflictions, like mortality, are temporary."



Read the talk in its entirety here