Fifteen years ago this week, I learned I was pregnant for the first time. Fourteen years ago tomorrow, I founded a tiny Yahoo group of women with babies who were one in ten thousand, babies like mine, babies with only half a heart, without a functional right ventricle.
Within a few years we incorporated as a nonprofit charity called Hypoplastic Right Hearts. In the last fourteen years we hosted three ground breaking medical conferences hosting cardiologists and surgeons who taught at UCLA, CHLA, Harvard, and Baylor Universities. We hosted panels of adult survivors, and we watched our compatriots and beloved friends bury countless babies, small children, and some of the very same adult survivors who were part of our group.
We existed in the dark corners of the Internet at night, afraid and soothing each other. We existed in hospital corridors and cardiac intensive care units, and though we lost many along the way, the rest of us survived. For many long years, I survived, and then things changed.
This kid named Mark started this business he calls Facebook (and then he married a pediatric cardiologist, but that’s just too much irony for one story). Anyway, Facebook ate our charity. Not only did our PHP private web site we rolled out when the Yahoo group got too big seem quaint with all the ever changing features of Facebook, Facebook was easier to use. Also, the moms of babies with half a heart were suddenly so much younger, and our kids were suddenly not babies, not toddlers, not even really classical survivors. I mean, yes they will always be survivors, but those who did survive were LIVING, really living, though many of us who witnessed the losses of children along the way were often too broken to relish it. Guilt and trauma are heavy anchors.
While both of my children were LIVING, I was still just surviving, and the last few years I’ve been quieter and more withdrawn as I coped. Last year we moved to a new house so our son and daughter could eventually attend the same high school as the rest of their middle school classmates. When we moved, I asked what remained of our charity’s board if we should disband. No solid answer came after a full year, so I asked again. The decision was made. The world didn’t need us anymore, and not just because of Facebook, and not just because our kids had moved beyond our own needs, and the new moms were raised on the Internet. Today’s heart moms are savvy, connected, and plugged in, but also we paved a way and the spirit of mothers (and fathers) uniting their hearts and minds against a complicated disease when we reached out to each other in the early years of the Internet.
In some really huge and important ways, we won a war. In 2010, I stood up in a room full of parents just like me, and I asked one of the premier and most renown pediatric cardiac surgeons in the world what they (they being his community of renown pediatric cardiac specialists) were doing for parents like us who had to manage things like neurology, gastroenterology, orthopedic surgeons, and occupational therapists along with cardiology. I asked him what they were doing to do about collaborative and cross disciplinary care. He humbly replied, “We’re not doing enough.” We kept working.
That was seven years ago this summer, and now there are multidisciplinary single ventricle clinics in several hospitals in the United States. When I uttered that cry in the dark that became Hypoplastic Right Hearts, babies were not born in our local children’s hospital, now they are. There were not fetal medical programs outside of Boston, now they are global. The world has changed, and though I won’t take undue credit, I believe that my rag tag little charity that never had an employee but made up for it with a whole lot of voluntary spunk had some small part in that change.
Now it is over. I went to the bank last week and closed the account. The proceeds, some $2,400, is in a cashier’s check made out to the Children’s Hospital Colorado Cardiac Institute for the Single Ventricle Survivorship clinic. Tomorrow, on the fourteenth anniversary of the day I started a support group on a communal computer in the family room of the Denver Children’s Hospital, I will return to that hospital (in a new location because literally EVERYTHING changes) with my son.
That it’s tomorrow is just a coincidence. We were invited to speak at a family panel in front of research scientists about Liam’s participation in a clinical trial. Our participation, like anything CHD (congenital heart disease) related these days is entirely at Liam’s discretion. I never force, I never decide, I only offer the options. He had an opportunity to be in this study and the easy out to decline, but he chose on his own to help other children through his participation. Tomorrow we return to the hospital, present the check to the doctor who is running the single ventricle clinic as well as the medical study, participate in the panel, and leave to begin the next chapter in our lives.
On Friday this week my son whose fight to survive three brushes with death and thirteen heart surgeries inspired me to start a support group, two charities, host medical conferences, write legislation, found a heart walk, raise hundreds of thousands of dollars for research and education, and write a book will face his greatest fear. On Friday Liam starts high school.
My friends, you have followed me from the depths of sorrow and fear. You have traveled this road with me and Jim, Liam and Moira, and for that I am endlessly grateful. But, here is where our CHD story ends for public consumption. Liam’s story is now, entirely, his own to write.
The next chapter in my life is not about Heart Warriors. My next story is about the effort and help I needed to stop the runaway train of my own PTSD. It is a story about the last seven years since I wrote Heart Warriors when I finally stopped surviving and started living. It is a tale about peace of heart, My Unclenched Heart, and I hope you will stay with me as I tell it. I think many of you who’ve followed along these past fourteen years will relate, and I owe you the whole truth because you helped me find my courage, my heart, my voice, and my way home to myself.