The Pratt's Guide to Heart Warrior Parenting

February is not only about Heart awareness- it’s also a month where we stop and recognize incredible men and women of color. In honor of Black History Month I can think of no better person to recognize than Dr. Vivien Thomas, the hidden hands and brain behind the world’s first pediatric cardiac surgery. Before the first pediatric heart surgery was performed at Johns Hopkins School of Medicine in 1944 by Alfred Blalock and Helen Taussig, the heart was considered an untouchable organ. While this medical advance was a game changer in congenital heart defects what is less known is the brain behind the ground breaking endeavor belonged to a brilliant African American man named Vivien Thomas who started out as a surgical research technician to Dr. Blalock at Vanderbilt University. When Blalock moved to Johns Hopkins as their Chief of Surgery, he insisted Thomas be allowed to join him. While that demand was met, Thomas was only granted the role and pay of a janitor since Baltimore was strict...

When most people think of February, Valentine’s Day candies and cards are what comes to mind. With Liam in our lives, February’s additional role as National Heart Month has taken the spotlight. This isn’t just about Congenital Heart Defects, even though our family is certainly honed in on that aspect. It’s also about heart health in general. One thing I have recently learned is heart disease is the #1 killer of women- more die of this disease than all types of cancers combined. If I really think about it hard, these are people with whole hearts that go bad for a variety of reasons: genetics, for sure bear some of the weight, but a lot of it is lifestyle- what we eat and how much we move every day. Things that are in our control. I have personally turned over a new leaf in the last week or so (I guess all those Facebook ads are more effective than I previously thought)- becoming more aware of both those things in my life to begin to feel not only better about myself but to also take re...

There are days when it feels like the natural evolution of becoming a heart mom is a never-ending march towards a lonely horizon. Even as Liam grows bigger and stronger, the work it takes to keeps things moving in a forward direction gets more and more difficult. Everything is purposeful and everything takes time and energy- finding the space to step away and connect with others fades into the background of a list of things to do a mile long.  I’ve been told by other heart moms that there will come a day where my mom problems will so far outpace those of my friends that I will have to compartmentalize those issues to keep my relationships from dying and even while I resist that notion, I feel its pull. Does she really want to hear about my horrible experience with a nurse at our last pediatric appointment or how tough it is to manage my son’s needs alongside my complicated relationship with my birth mother? There comes a point when the sharing becomes dumping and then a friend tur...

Today marks the one year anniversary of Liam’s HLHS diagnosis. I remember the awfulness of the morning with crystalline clarity followed by the despairing hours as we waited to be seen by a perinatal cardiologist. I remember how hope was restored by nightfall.  I also remember that Christmas was one of the hardest times my husband and I have gone through. Eliza was not yet two, but she was really soaking in the fun of the season and I felt completely torn on how I should  feel. I expected myself to buck up and muster some joy for the sake of my daughter, but what I did was pretend during the day and cry in my husband’s arms at night.  Today marks the day in which my projections of motherhood were shattered, glued back together, and repackaged into the brave new title of “Heart Mom.” As the saying goes, “Mommin’ ain’t easy.” How little did I know of the difficulty that would be before me. The journey to this place and time has been tumultuous. Like life passing before my...

It’s been three weeks since Liam was discharged post Super Glenn, two weeks later than initially projected. Six weeks before that, Logan and I were sitting helplessly in PCICU while cardiologists and surgeons scratched their heads unsure of why the lauded Glenn Procedure was failing our 4 month old son. I have joked, in my classically biting way, that I will need years of therapy for those 8 days alone, but the joke’s on my insurance provider because it’s true. Of all the things Liam has had to go through, this was the most harrowing yet.  This truth is particularly galling given how this surgery was billed: easy procedure, fast recovery. A quality of life game-changer. None of those things happened for us. Maybe the last one, but not in the traditional sense. Liam is pinker and more vibrant for sure, but the Super Glenn continues on the shunt dependency that made the Norwood tricky. The Super Glenn puts Liam in a grey area of pseudo-Interstage, or purgatory, given the season....

What a difference 24 hours makes. This time yesterday, Liam was being wheeled back into the OR for a last-ditch effort to bring him back to the land of the oxygenated living. Today, his saturations are 20+ points higher and his little body is pink and on the mend.  There are different, non-medical, terms for the Glenn + Shunt: The Shenn , The Glunt , and my personal favorite, The Super Glenn . In talking with Duke’s Chief of Pediatric Cardiology yesterday, it seems as though there is a small subset of HLHS kids who just need more than what The Glenn has to offer. As of now, there is no research that would provide clarity on the existence of indicators which would point surgeons to an immediate “Super-Glenn” procedure. Partly because it’s only now that more and more kids are making it through interstage and partly because the need for more pulmonary pathways is being considered case by case, hospital by hospital. Maybe sometime soon a study will be created so that kids like Liam wi...

As I write this post, our boy is 8 days post-Glenn and in the OR getting a BT shunt that will hopefully provide his lungs a new pathway for oxygen-poor blood to soak up and send out oxygen-rich blood to the rest of his body.  If you had asked me before the 27th of September where we would be 8 days out from the Bi-Directional Glenn, I would have said, “hopefully looking towards a discharge and home.” That was before we learned that Liam was a risky candidate for the Glenn and, today, I wonder if such a luminous path remains possible.  The surgeons hope that they can keep the Glenn physiology in this surgery. It is possible they will have to undo all their work from last Thursday- it all hinges on whether this shunt will be what Liam’s lungs need.  We have been hoping each day for better outcomes and each day we are gut-punched with disappointing news. We hope all he needs is a shunt- that it would be Liam’s golden ticket, that it would be so easy and he could come back...