By: Katlin Chadwick, Writer, Garfinkel + Associates
Being part of the team that researched and wrote APHL’s new book, The Newborn Screening Story: How a simple test changed science, health, and lives in America, was quite different from other writing projects I’d been on in the past. On some days, it was as if I was going through a minor and muted version of the emotional journey taken by many parents and caretakers of children who’ve been affected by newborn screening. The range of emotions was extensive.
Anxiety. As the phone rang, I was actually hoping, just for a second, that the person I was calling wouldn’t pick up.
I was calling for an interview with Jana Monaco, an activist and a mother. We’d never met, but I had read about her life and family. Her now 16-year-old son had become severely disabled at age 3. He was born with isovaleric acidemia – a genetic disorder that could have been detected at birth through newborn screening – although his family had no idea. If the state where he was born had offered this test at his time of birth, he could have been put on a special diet – and he would be healthy today.
“Hello?”
Remorse. I’m bothering her, I think. She not only has her son to care for, but a family of six. And re-telling her story has to be a heart-wrenching task.
Jana’s interview was among many I would do with parents whose children were and are directly affected by newborn screening. Their willingness to share their personal stories was critical to getting out the message of awareness and education. Though I’ve written many stories about tough topics in my life, these were some of the most trying. Each person was different, but each interview raised this set of feelings.
Unworthiness. I couldn’t relate. I could try, but I would never be able to put myself in Jana’s shoes, entirely. I don’t have children, let alone one whose life could have been healthy if just for the newborn screening test.
If only. What if. These were questions I soon learned parents like Jana refused to let themselves wonder about anymore.
Admiration. Jana welcomed my questions. She laid out for me her own personal transition after learning of her son’s illness. From heartbreak and anger into a diagnostic odyssey of sorts into acceptance and the eventual carrying out of personal promises made to her son.
This transition strikingly paralleled that of many people I interviewed, I found. Moms and dads carrying out promises uttered to children in times of devastation. Parents understanding that they wouldn’t be able to change everything, but boy, could they change something. Their advocacy becomes therapeutic, and raw emotion becomes something more.
Awe – that day after day, parents like Jana turn tragedy into positive action. They make a difference for the babies born today, tomorrow and to come. Though they must never get used to telling their stories, they’ve seen and accepted what that story can do. So they find it in themselves to hit replay over and over, somehow.
Realization. What I was doing, in some small way, was helping. By gathering these personal stories and publishing them, we were helping spread the word of newborn screening’s importance to others. These parent advocates and I shared a common goal.
And finally, satisfaction. It felt good to be a part of something that could make an impact. APHL was taking action – and we hope the book does the parents justice. I think it’s important to see what’s happened in the past in order to realize what can be done – today, this year, down the line.
In telling and celebrating the 50-year history of this test, the team spent months researching, gathering oral histories, securing time with busy families, experts and lab workers, and compiling, writing and editing. With the key overriding message that this test saves lives, we wanted to make it an accessible, enjoyable, and even inspiring read for the general public.
To read Jana’s story and others, I encourage you to download the book. Pass it on to others and keep the conversation going!
Katlin Chadwick works at Garfinkel + Associates, a Bethesda, MD-based team of writers. She has a master’s degree from the University of Missouri School of Journalism and has written for Missouri Life Magazine, Washingtonian, and D.C.-based arts and culture websites.
