Many parents with severely disabled children live life underground. Apart from societyâ€™s burbling mainstreams, they labor beneath the weight of exigent circumstances, dealing with mortal crises day by day. They monitor their childâ€™s breathing, their sleeping, their every bodily function, often for years, developing a sense for delicate balances in their particular domestic environments. Grief has become part of these parentsâ€™ body chemistries. So has perseverance. When they get sleep, they dream of their children walking, talking, playing, the full light of uninhibited life shining in their eyes. Or they have nightmares where jeering people accuse them of not doing enough. Many of these parents have witnessed miracles, including their childrenâ€™s courage and strength in the face of terrible odds or, in some cases, in the face of the mishandling and abandonment theyâ€™ve suffered from the medical and the insurance industries, neither of which knows enough but acts with authority anyway, sometimes making detrimental or even fatal decisions that they write off because they can. These parents have remarkable stories nobody wants to hear. Theyâ€™re too much, they donâ€™t all come out well, they arouse our deepest fears, wear thin our charitable impulses. Like ghost stories, they take the tellers and the hearers to the edges of who they are: Theyâ€™re haunting because theyâ€™re true, yet theyâ€™re unbelievable.
Sixteen years ago, on April 22, my daughter Mattea was born. Back then, my husband and I had no idea sheâ€™d suffered a severe brain injury in utero, nor did I know it was Earth Day. All I knew was that Iâ€™d given birth to a baby girl. Afterward, the midwife wished me happy Earth Day. I barely heard her. I was awash in the thrill of having giving birth to a daughter. Wow, a daughter! Earth day? Whatâ€™s that?
As many of you know from previous posts, we discovered later that large portions of her brain had been destroyed by a predatory organism called cytomegalovirus. These past sixteen years, days and nights spent caring for and trying to help Mattea, as well as a son born before her and another daughter born after her, have been intensely, maddeningly revelatory. For those who might be interested or who have lived similar stories, in honor of Matteaâ€™s Sweet Sixteen Earth Day Birthday, Iâ€™d like to try to tell more of her involved tale. Itâ€™s a hard story and probably a frightening one. And I wonâ€™t be able to tell it whole. But if you are interested and stick with it, I promise Iâ€™ll come to a point that youâ€™ll be able to make something of.
First, about the germ: Cytomegalovirus (CMV) is a common virus of the herpes family. Chances are fair to good that sometime during your life youâ€™ll get a CMV infection, since between 50 and 80 percent of the population in the U.S. contracts it by the time they reach their early 40s. Usually, children who contract CMV pick it up during early childhood, especially, as one site puts it, children â€œin child-care and preschool settings.â€ This would include church nursery. Often, infected children and adults show no or only mild symptoms. The Center for Disease Control reports that CMVâ€™s symptoms, when they manifest, mimic mononucleosis. In otherwise healthy children and adults, the disease presents no special problems.
But if a woman suffers a first time infection during pregnancy, CMV may cross the placenta and infect her unborn child, whose developing immune system is inadequate to repel the attack. The earlier in the pregnancy CMV attacks a fetus, the more severely it can disable the child. Later term fetuses have more mature immune systems. Usually, they suffer less severe effects, though the effects they do experience â€“ varying degrees of deafness or blindness â€“ can be challenging enough. The CDC reports that 1 to 4 percent of uninfected mothers get their first CMV infection during a pregnancy. Repeating the mantra of most CMV information out there, the CDC says, â€œPregnant women can catch CMV through contact with children in day care, especially from children who are one and a half to two years of age.â€
All the usual bodily fluid suspects, including breast milk, transmit the disease. Toys that infected children handle can spread CMV to uninfected children who play with them. Children infected in a childcare environment, such as day care or church nursery, may bring the virus home to their family. So a pregnant day care worker, including a day care worker who doesnâ€™t know sheâ€™s pregnant, is at special risk. So is a pregnant woman who has a child in day care or who might baby sit or play with somebody elseâ€™s child who attends day care. A pregnant woman suffering a first time CMV infection may not know anything is amiss. Her symptoms, if they show, will mimic a mild but persistent cold. Meanwhile, the virus hits her unborn babyâ€™s central nervous system like a hard frost, destroying budding tissue left and right.
According to the CDC, one child an hour is born to a life of permanent disability due to a congenital CMV infection, with the disease disabling around 8000 children each year. Dave, our first and by far our best pediatric physical therapist, said he suspected the number was much higher, believing many more children are born with disabilities resulting from congenital CMV infections than are detected or supposed. As far as protecting your unborn child is concerned, the CDC makes no guarantees: â€œNo action can totally eliminate risks of getting CMV for the first time during a pregnancy.â€ A CMV vaccine is still in R & D.
I hope that by the time my youngest daughter marries, the vaccine will be available for her if she needs it. Until then, knowing that CMV exists, getting tested to determine whether or not she is at risk for contracting a first time CMV infection during pregnancy, and practicing exceptionally good hygiene during pregnancy remain her only ways to protect herself from a CMV infection. All things I wish Iâ€™d known back when.
Those are the basic facts of CMV, cold and hard as stones in a stream. Ask any family who has raised a child who suffered a congenital CMV infection and the story becomes dramatic and extraordinary.
The probable vector of my CMV infection was an ill, eight-month-old child left in my care when I was at the end of my first trimester. My general practice during pregnancy was to reduce my risk of illness of any kind by cutting back on social engagements and by not allowing children who werenâ€™t mine into my home. So at first I refused the request to baby sit the little girl. The person making the request pleaded. â€œIt will be easy, sheâ€™s asleep. See?â€ I gave in. I didnâ€™t know the child was ill and the person who left her didnâ€™t think it important enough to mention. He simply laid the child, still sleeping, on a quilt on my living room floor. She woke an hour later, irritable and fussy. Clearly, she wasnâ€™t well. Sheâ€™d only be comforted if I carried her. Irritated with the trouble but determined to take the best care of her I could, I got out my baby sling and wore her on my hip for about an hour. I wiped her nose; I changed her diaper; she sneezed and coughed. She slept off and on, nestled against my side. Having received no education on CMV, I had no idea such a disease existed. I thought, â€œOh well, she has a cold. The worst that will happen is that I might catch it, too.â€ And I did. I was pleased at the mildness of the symptoms. I remember thinking, â€œThis isnâ€™t too bad.â€
And I forgot about it. A year and a half later, we were fully immersed in the Mattea mystery. I needed advice desperately. I called a friend who had walked through a similar fiery furnace. Her son was born with Fanconi aplastic anemia. Not only had he received a bone marrow transplant at a very early age, but also he struggled with a host of related disabilities and illnesses, including damage to his DNA caused by overdosing with the cytoxan in his chemotherapy drug and hepatitis C contracted through a blood transfusion. Because CMV does endanger children and adults whose immune systems are compromised, such as AIDS sufferers or people taking chemo or immunosuppressive drugs for transplants, as her son had done, she was more up on CMV than I was.
â€œCMVâ€™s tenacious,â€ she said. â€œStudies have shown it survives on surfaces, like changing tables, toilets, and sinks, well past the usual life span of many viruses exposed to air. Itâ€™s especially rampant in day care environments. Thatâ€™s where youâ€™re most likely to pick it up.â€
â€œDay care!â€ I said. â€œBut I donâ€™t do day care and I donâ€™t know anybody in day â€¦â€
Just then, the family whoâ€™d left their baby girl with me when she was sick walked by the window. At two, she was toddling, cute, and healthy. In a flash of shock, I recalled that both her parents worked and that the little girl had been in day care almost since sheâ€™d been born. That very day sheâ€™d been left in my charge, sheâ€™d come straight from day care.
â€œOh, yes I do,â€ I said, watching them pass. â€œI do know someone.â€ And the bolt struck, lighting up corners of my life I hadn’t given much thought to before. I saw the opulence of my ignorance, light splashing off its absurdly large jewels and foolish golden cups. I saw the harrowing intimacy in which Iâ€™d been living with my fellow beings, an intimacy whose depths and power Iâ€™d grooved along ridiculously unaware of. I saw human agency as a dynamic system of animated choices and radiating consequences rather than as a personal-sized pizza topped with individual rights and private desires. In its flight of shock, my mind circled around and around a single, dazzling point. I saw that, regardless of its insubstantiality, common ignorance â€“ what a person doesnâ€™t know â€“ works upon the world in hammer strokes of mortality.
So this was how it worked! You could pay a generous tithing, give 110 percent in your church callings and perform all church and family responsibilities within the best of your abilities. You could abstain from tobacco, coffee, cigarettes, alcohol, illicit drugs (or even most legal drugs), and, going the extra mile just to be sure, avoid Coke, which you hated anyway. You could uphold the law of the land. You could pray, repent earnestly of sins great and small, and set your mind upon the straight and narrow path. You could strive for honesty in your dealings with your fellow men and women, be modest in your thoughts and prudent and faithful in your marriage and otherwise maintain your temple worthiness. You could even love your fellow beings passionately (most of them). You could trust God not to push you beyond your ability to meet the challenge. Still, one charitable act, replete with the best intentions yet lacking some minim of knowledge, could send you and others dependent upon you careening into a hairpin turn, where you see the face of God, so unlike your imaginings, so full of wrinkles, dimples, and blinding gleams it wrecks your paradigm just like a common traffic accident totals a pampered vehicle.
Meanwhile, those who ran you off the road motor on their way, completely unaware and unaffected, their futures smooth and undisturbed by the already forgotten episode.
(To be continued …)