I crawled into bed that night, 15 years ago this day on September 30, 2004, knowing that in the morning, by way of a cesarian section, I would finally become a mother after having had 4 pregnancy losses. I didn’t know the baby was a boy. I didn’t know that his brain had been ravaged by a common virus (cytomegalovirus) sometime during the first trimester, leaving it severely damaged. I didn’t know that all I had dreamt of would have to be let go of…modified, reshaped, transformed…so to fit into a life I had never imagined.

All I knew was that I was scared, but ultimately, I was exhilarated. 

Tomorrow, October 1st, my precious son Brendan Bjorn turns 15 years old. 

Over the last 7 years or so, each year I thought it would be his last. DNRs signed. Doctors telling me it didn’t look hopeful. And then again. And again. Yet, here he is! My first born son who has taught me the meaning of unconditional love, sacrifice, selflessness, and of life. As parents, we could only dream of teaching our children such all-important lessons. But it is he who has taught me all of that, and more. Truth be told, I’m still learning from him.

Another gift he’s given to me? Well, if it wasn’t for Brendan Bjorn being exactly who he is – how he is – I wouldn’t have had Declan. I was only going to have one child and carry on with my career path. That was the plan. But 15 years later, here we are in a place that wasn’t in my plans and living a life that certainly wasn’t part of the plan.

As the saying goes, life is what happens to you while you’re busy making other plans. 

Even though this journey has been, and still is, incredibly difficult much of the time, and even though I know how this journey with Brendan Bjorn will one day end, the ultimate gift given on his birthday tomorrow will be given to me: The gift of celebrating 15 years of being blessed to be his mother.

Happy birthday, angel boy!

 

I want everyone seeing this to please, please read it, and then share it. This blog wouldn’t have ever been written if it wasn’t for me having contracted CMV, cytomegalovirus, while I was pregnant with my son Brendan Bjorn. This particular blog entry is being written this morning because a letter my son Declan brought home from his school yesterday hit me very hard. It has left my heart breaking and my thoughts reeling as I am reminded of the fact that CMV is seldom heard of, despite it being a very common virus.

Please, please read this piece.

Laying on the table to the right of my laptop is the letter. It describes every parent’s nightmare: That of having a child with a life-threatening illness, in this case, cancer. The letter continues to rightly ask parents to not send their children to school if they develop chickenpox, shingles or measles in an effort to keep this precious child as healthy as can be. It goes on to encourage the MMR vaccine, again, rightly so in my opinion.

What it of course doesn’t mention is CMV, cytomegalovirus, because:
1. The majority of the public don’t know about CMV
2. There is no vaccine for CMV.

I should also note that CMV is in the same viral family as chickenpox and shingles.

Back in the early days of CMV Awareness campaigns in America, those of us involved in the campaigns were well aware that experts in virology and CMV were concerned of what was often described as the potential of mass-hysteria if the public knew about CMV and that there was no vaccine. But the flip side of that worry is that, as history has shown with other viruses and vaccine development, public outcry…indeed, even mass hysteria on a certain level…is often the catalyst needed for governments to fund vaccine research as needed.

Instead, as of today, funding is still greatly lacking, the public still isn’t knowledgeable about CMV, and not enough has changed.

Cytomegalovirus is a common virus. It is also a common illness in childhood but is often asymptomatic (meaning showing no outward symptoms) or presents with flu-like symptoms. Nothing which would raise alarm to a parent. And frankly there’s nothing which would be done even if it was known to be a CMV infection as it is essentially harmless as a childhood illness.

BUT…to a child with cancer, as the one in this letter sitting next to me, a CMV infection could potentially be devastating because the virus taxes the immune system needed to fight cancer, instead leaving it trying to fight CMV.

This is often a serious concern for cancer patients of all ages who also carry CMV. 

Once a person contracts CMV (approximately 80% of the world’s population will have contracted it by middle age), the virus remains for life, usually dormant, but at times reactivating. This reactivation often happens when the body is stressed in some manner – injury, illness, exhaustion, etc. When it reactivates, the immune system fights to again suppress the virus. This cycle goes on for a person’s life.

What is needed is a vaccine to eradicate this virus, but as there are various strains of CMV, researchers find this a very difficult, complex task. They must continue this important work and must be properly funded. 

Congenital (meaning present at birth) CMV is what affects my son Brendan Bjorn. Best guess is that I contracted CMV early in the pregnancy. When a pregnant woman contracts CMV, there is an approximate 1 in 3 chance that the virus will cross the placenta and attack the developing baby, including the brain. This is what happened to my beautiful son. This is the virus that left him with severe brain damage in utero, unbeknownst to me or any of my physicians. This is the virus that has left his body fragile, profoundly disabled, medically complex, and which one day will take him from me.

Congenital CMV (cCMV) disables more children each year than does Down Syndrome, Fetal Alcohol Syndrome, or Spina Bifida. cCMV is the leading, non-hereditary, cause of childhood deafness. Of the approximate 1 in 150 babies born positive to cCMV, 20% will have a life-long disability. cCMV is one of the leading causes of childhood Cerebral Palsy.

The most common way a pregnant woman contracts CMV is from young children, including her own, who have a current active infection as the common childhood illness that it is. And remember that it is often asymptomatic.

CMV is spread via bodily fluids: Urine, saliva, semen, blood. Until a vaccine is one day developed, all that can be done to protect from contracting CMV is to take extra hygienic precautions. If you are pregnant, wash your hands thoroughly after changing nappies or being exposed to bodily fluids. Don’t share utensils or cups while eating. Don’t kiss your young child on or near the mouth, instead, kiss them on their forehead. Educate yourself, please. You can learn more about CMV here.

There is no vaccine for this insidious, common, virus. 

God how I hate cytomegalovirus with every fibre of my being. 

I look back at the letter from Declan’s school knowing that CMV poses maybe an even greater risk than the mentioned measles to this child with cancer, as CMV is much more common that measles nowadays…and the same feeling of helplessness arises in me as it did nearly 15 years ago when I first learned about cytomegalovirus. I wish to God there was something I could do, but short of continuing to raise awareness as best I can, there is nothing more to do.

Please share this to help raise awareness of CMV, cytomegalovirus.