Hello friends. It’s been a while since I’ve given you a health update on Kanon, and it’s about time. Especially now that we have some answers.
After our appointment in February with the neurologist, he ordered some blood work. If you remember from my post, it was A LOT of blood. They tested for lots of different “stuff.” Some of the things they were testing for were very scary things, and most of the things they were testing for I didn’t even know about. We finally received the results of his blood work the end of May. It was positive for CMV. That stands for cytomegalovirus. You can do a google search for congenital CMV to find information, but I will share what I have learned after researching and talking to our doctors.
CMV is a very common virus. Most children get it by the time they are 2 years. Another peak time to contract it is teenage to young adult, and by the age of 40 years, 80% of adults in the U.S. have it. If you do contract it you may never know because a lot of times it is “silent,” meaning you never show signs or symptoms. Even if you do show symptoms you may never know that it is CMV because the symptoms are common to other viruses as well and include: fever, sore throat, fatique, and swollen glands. Once you have CMV, it’s there for life. It is usually not a problem.
The time when it is a problem, is when you contract CMV for the first time while you are pregnant. It can cross the placenta and attack your baby. But, even then, it is not always a problem. The majority of the time the mother contracts CMV and passes it along to her baby, and no one would ever know because neither one of them show symptoms. However, some babies are born with symptoms.
Temporary Symptoms Include:
Purple skin splotches/Rash
Low birth weight
Lack of coordination
Pretty serious stuff. Kanon had the purple splotches at birth, and he has hearing loss. Praise God this is all he has! Now CMV is progressive though. So of the babies that are born showing NO symptoms, 5-10% will develop symptoms months and years later. And of the babies that are born showing symptoms (which is Kanon), up to 90% have neurological abnormalities later in life. His hearing could continue to decline until it is gone. His vision could do the same thing.
BUT so far he still has full hearing in his right ear. We had a repeat MRI done in June to compare it to the one in November 2009, and it showed no changes! Which, besides the Lord completely healing him, this is the next best news. It gives us hope that what is done is done. It will not progress. And just today we had another appointment with the neurologist, who thought he looked great. He said Kanon had a very mild case of CMV and seems to be developing just fine. He also said we don’t need to go see him for 10 months!!! And we don’t need to have another MRI for another 2 years!!! We will be having his vision tested shortly and are trying to get hearing test scheduled for sooner than November (which is how long the wait is right now).
Again, if we had never had that x-ray that led to that CT scan that led to that MRI during his hospitalization with meningitis, we would NEVER had known anything was wrong. He has been completely “normal.” We haven’t noticed anything “off” developmentally. He is the happiest, most smiley baby ever. He has been such a joy. So content. Never really cried or screamed until now, when he runs out of food or wants a big boy cup. Really, we can’t get enough of this boy.
Here are a few more facts on congenital CMV:
-CMV is the most common congenital virus in the U.S.
-CMV is as common a cause of serious disability as Down Syndrome, Fetal Alcohol Syndrome, and Neural Tube Defects
-every hour congenital CMV causes one child to become disabled
-about 1 in 150 children is born with congenital CMV
-about 1 in 750 children is born with or develops permanent disabilities due to congenital CMV
It is transmitted through bodily fluids, and hand washing is the only preventative measure. More on this later.
Feel free to ask me any questions. I’ll answer to the best of my ability.
We love The Manon, and praise God He gave him to us like he did. For our good, and for His glory!