The Pratt's Guide to Heart Warrior Parenting

I want to start this by first ensuring readers understand I have not served in the military although I know several friends and family members who have. After seeking advice from my brother, who served in Afghanistan, I feel comfortable sharing the following thoughts. There are few people who understand what it’s like to be parents to a chronically ill child. We call kids like Liam “heart warriors,” because living each day well is a hard-won victory. Being a parent to a child like Liam requires extensive training, sacrifice, and 24/7 vigilance. The last 32 months have been spent with our "heads on a swivel." I was speaking to my oldest younger brother recently and we were discussing analogies. Even for my siblings, it's hard for them to understand what it has been like to be parents to Liam.  Separated by over 350 miles, their view is limited to Facebook, this blog, and the few days a year we spend together at various family celebrations. We agreed heart parenting does...

It’s been 10 days since Liam died and our lives feel like an episode of “The Twilight Zone.” Real, yet surreal with a lingering gut punch feeling- especially at night when the girls are asleep and the brain just won’t turn off.  At first, the images that replayed were of the Saturday evening when things turned terrible. Turning to pack a syringe of food for the ED and turning back to see Liam in cardiac arrest. As I type this the images jump back into my mind. Now, the images and thoughts are Sunday and all the things that day which led up to our boy’s death. What if? is a game all parents play when one of their children dies. It’s a game no one wins and yet is played countless times everyday. Ambien helps when, even exhausted, my mind goes into overdrive wondering what could have been if only we’d done this or that.. . All that thinking does not reverse the clock- instead, I’m stuck in this endless loop. During the day, there are our girls to take care of. Eliza is 4 & 1/2-...

Note to the Reader: This was written right after Liam's discharge following the Fontan in July in its entirety, prior to the events that precipitated Liam's death. Liam died on September 13th following an unexpected cardiac arrest caused by an arrhythmia on September 12th.  As I saw Logan pull into the driveway with Liam from my bonus room office this afternoon I was surprised to feel what seemed to be 100 pounds fall off my chest. I don’t think I had realized what kind of burden I was carrying. While we don’t know what still lies ahead, all the certain challenges are done. The unknown is still scary, but now I have the capacity to hope the hardest things are behind us for a while. When you live a life in fear for two years knowing earth shattering events are just around the corner, there’s a certain kind of relief with having it done.  If you remember what it felt like to break a vase or some other family relic and then realize your parents were going to be furious with you...

If you had told me in early June that by mid July, Liam would be headed for his Fontan procedure I would have shook my head in disbelief. Of course, if you had told me this time last year that in 2020 we would all be wearing masks and social distancing because of a virus raging around the world without a cure, I would have mistaken you for one of those guys on a street corner holding a sign saying, “the end is nigh.” This year continues to cement in our hearts the knowledge the plans we make cannot withstand the forces of time and chance. It is a lesson we all learn, forget, and learn again with each unexpected turn our lives take. The Fontan procedure is the final stage of a 3 part palliative surgical approach to Hypoplastic Left Heart Syndrome. In it, surgeons will disconnect the inferior vena cava (ivc) from the heart and connect it to the right pulmonary artery (rPA). In Liam’s case, they will likely add a fenestration (a connection that links the heart to the IVC). I have provi...

Like many parents and family of immune-compromised loved ones the first thing that popped into my mind when I started hearing about COVID-19 was, “this is how we’re going to lose Liam.” Maybe that seems dramatic for the everyday person who is young and/or unfamiliar with chronic illness, but to heart parents even the Flu is deadly, so something like Coronavirus is terrifying. We do all the smart things: wear masks in public, wash our hands excessively, limit our trips to the store to 1x per week, etc..., but Logan works in healthcare, so there is a certain amount of risk that we take on at baseline. We can only hope a viable vaccine or treatment can come online faster than the spread, but even as public places reopen, we’ll continue to practice social distancing until a treatment is found because this pandemic is far from contained. We are incredibly fortunate as a family to still have our jobs- our work is essential and I already work from home. It goes without saying many of our f...

So, just to be clear, we do not have Maternity Leave in the United States. I know that seems weird, but it’s only because we often mistake Short Term Disability (STD) and Family/Medical Leave Act (FMLA) as Maternity Leave. This could not be further from reality. Here is what actually happens: Working mothers buy STD insurance and are reimbursed between 60-70% of their normal pay for 6 or 8 weeks depending on the type of delivery (vaginal or cesarean). Meanwhile, FMLA guarantees a parent can be on the unpaid  leave for up to 12 weeks. To add insult to injury, most companies count the first 6/8 weeks of STD as part of FMLA which leaves parents with only 6/4 more weeks until their job is no longer protected and they must return to work. There exists no federal regulation that ensures FMLA is counted separately and so most companies combine them. For some readers, this may seem like a sweet deal regardless- after all, isn’t 6 weeks off kind of amazing? I mean, sure, if I was going ...

I’ve flipped back and forth on whether or not to invite the world into our newest news- not because we don’t want to share, but because the implications are far reaching for Liam though we (and most of the medical community) know so little about it.  For those of you who’ve seen Liam in person, he has some distinctive features: arched brows, incredible hair, and elongated eyelids. These are classic identifiers of Kabuki Syndrome which is incredibly rare and is a multi-system genetic disorder. We have known from the start about many of these systemic anomalies, but with this diagnosis we finally have the missing thread that binds them all together.  It’s such a rare disorder that our last specialist (at Duke) with years of experience said, “I don’t have any experience with Kabuki.” As you can imagine, that was not very reassuring. The funny thing is, most medical professionals we’ve spoken to say something nearly identical and we’ve been forced to send scientific papers and ...