“rapid breathing of the newborn”
“morbidity vascular ring repair”
“esophageal dilatation toddler”
“vascular ring story blog happy ending”
“double aortic arch multiple surgeries”
“afraid my child will die”
“misdiagnosis eosinophilic esophagitis”
These are all real search terms I’ve typed into Google in the years since my daughter — now twelve years old and completely healthy — was diagnosed with a Double Aortic Arch just after her first birthday. In the intervening years, I typed those words into a desktop computer while nursing her on a big pillow in my lap or while she played on the floor nearby with her big sister; on a laptop at a coffeeshop while she went to preschool; on my first smartphone while I waited for her to come out of general anesthesia. I’ve been searching for stories like hers since I knew she’d have a story to tell.
What I wanted as I searched was a way to hear and really believe that she would be ok, someday. I wanted to read a story like hers and see myself in it, the parent methodically searching and prodding and digging for the end of the trail, the healthy Wonderland at the bottom of the unending rabbit hole through which we’d been tumbling. I’ve joined Yahoo Groups and then Facebook groups, talking with other parents. I heard mostly the sad stories; as I would learn, only the people still looking for answers are members of disease-specific groups. The people who have solved their problem or found a way to live with it gracefully are usually not drawn to fraught discussions of medication and surgery and special diets.
I vowed not to be like that, if we ever found an answer. I vowed to be the person inserting hope into the conversation, the one saying, YES, I was scared like you, YES, my child struggled like yours, and here’s what we did, and maybe that will work for you.
Because of that promise to myself, made when I was deep in the thick of Google searches and worry, I’ve done two things in the three years since a surgery solved all of my daughter’s health problems:
- I’ve stayed in the discussion groups. In some, I lurk and answer only the questions that seem completely relevant. In some, I’m actively cheering on the parents who need hope, whose kids seem most like my own. Sometimes I answer privately. Sometimes, I answer publicly for the people who may be reading but not writing themselves. I stay available and I tell our story. Nowadays, there are people who know to tag me or alert me if our story might help another frightened parent navigate their own journey. That, in itself, is extremely gratifying. Our story is going where it needs to go.
- I’m writing a book. I’ve talked about it before, asking for your stories or questions. Comments have been light, but I’m pressing on. This month is a big writing month for me, as I tackle the challenge of daily focus via NaNoWriMo. Not everyone absorbs information online, and a book checks off more than one box for me, personally.
Last month, in my research, I came across an article in the New York Times Well Family section. In her article Learning to Breathe, Amy Paturel writes a story that was immediately so familiar to me that I sat at my computer and held my breath as I read. Like my daughter, her son Jack was a younger sibling and a week late to arrive. Like my daughter, Jack was diagnosed with a double aortic arch just after his first birthday. Like me, Amy worried about all the ways she might have caused this problem — we both had terrible colds when we were pregnant and drank wine before we knew we were expecting — and like me, she was reassured that she could not have caused her child’s congenital heart defect. For both of us, it was bad luck.
Unlike Sammi, Jack suffered from chylothorax in his first surgery, something she would not experience until her second surgery seven years later. Still, Amy seemed to find it as distressing as I did, and she writes beautifully about her feelings of fury and fierce advocacy that marked their stay in the hospital. Her article was the story I needed when I was doing my early Google searches. Even though it came eleven years after I needed it, there was a young-mother part of me that was soothed by its existence.
Of course, I wrote to Amy right away. She was gracious and lovely, and we share many of the same wishes and hopes. In fact, I’d been trying to get the attention of the New York Times Well Family section for years to tell this very story — and now, it’s been told. It doesn’t matter that it’s the story of another child’s struggle and not my own. Someone, somewhere, will Google “baby chylothorax” or “double aortic arch baby,” and Amy’s story will be right there, ready to take that frightened parent by the hand and say, between the lines, that they are not alone.
They say you should write the story you need to read. Amy and I are doing exactly that.