I still haven’t gotten a chance to write Mouse’s birth story, because every time I would try to sit down and put that beautiful day into words I was reminded of this big dark cloud that has been hanging over our heads.
When Mouse was a week old, we received a call from his pediatrician telling us that he’d had an abnormal test result from his newborn screening.
In all 50 states, hospitals are required to collect blood samples from a heel stick shortly after a baby is born. This blood is then tested for a whole host of disorders like PKU, hypothyroidism and MCADD, only to name a few.
Our son’s test had been flagged for high IRT levels – meaning he could have cystic fibrosis, a deadly inherited chronic disorder that could destroy his lungs and leave him unable to process nutrients.
Our second reaction to this news (our first being immediate and fervent prayer) was to learn everything we could about the disease. We’re information junkies, but this wasn’t knowledge we really wanted to have.
Nevertheless, while we waited a week for an appointment to have true diagnostic test done (and another week for those test results) we read all we could find about CF.
Early symptoms of the disease include failure to thrive, coughing and wheezing, stool issues and salty-tasting sweat. So we weighed our baby every few days before his morning feeding. We trembled at each sneeze and cough, inspected every diaper. And yes, we licked the baby. A lot.
And while his sneezes seemed normal, his poop perfectly formed and his weight gain impressive (27 ounces in two weeks), we worried that maybe he did taste a little bit salty.
When it came time to have his chloride sweat test performed, we made the nerve-wracking trek to the children’s hospital. There, the technician strapped electrodes to our baby’s arm and applied an electric current to stimulate his sweat glands, then wrapped a spot on each arm with gauze and plastic. I had to hold him still for this, shushing him through his grunts and cries of protest.
That in itself was a supremely shitty experience, but it had to be done so I put on my calm mom face and did it as my husband sat close by, white as a ghost and looking like he’d like to vomit. Later, as the days ticked by so slowly while we waited for test results, we took turns consoling each other.
That’s one of my favorite things about our marriage – the unspoken agreement that we are forbidden from collectively losing our shit in times of crisis. We have to take turns. Somebody has to be the badass at all times.
We were, thankfully, one of the lucky ones this time. Our son tested negative for cystic fibrosis. But I know too much now, and I can’t just go back to being oblivious to this disease.
While it once proved fatal for children early on, cystic fibrosis is now much more manageable. The average life span for a person with CF reaches into the late 30s. There is no cure, but science is working on it, folks, and with our help I believe that in my son’s lifetime there will be.
Cystic fibrosis is a sneaky little recessive disorder. More than 10 million Americans are symptomless carriers of the defective gene. It’s not something that can be predicted by family history – and it will strike one in every 3,500 live births in America.
Next month is Cystic Fibrosis Awareness Month and I’d like to begin now doing my part to help fight this disease. I encourage you to read more here, and if you feel called, to join me in donating here.
The Cystic Fibrosis Foundation is in the business of adding tomorrows, and I hope you will join me in helping them.