The Pratt's Guide to Heart Warrior Parenting

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 ...

There is so little control we have in this world. For most people it takes an earth-shattering life event to remind them every now and again that isn't true.  Everyone seems to be walking around on this planet thinking they have more control than they actually do. Then, suddenly, a friend or family member gets hurt or dies unexpectedly. You lose your job to a layoff. Someone you care about gets cancer or loses a pregnancy. It doesn't happen often, but when it does, it kicks you in your keister and you spend a long time thinking about how it could have been prevented or what you could have done to stop the tragic event. It drives you bonkers and then one day your brain realizes it needs to stop doing mental Crossfit and you go back to thinking you have control and everything is fine until the cycle starts again a few months or years down the road. With Liam, it feels like this fact is in our line of sight every day. Every day that is a good day is welcomed as an unexpected surp...

Doctors are not infallible and they’ll be the first people to acknowledge that fact, but so many of us treat them like they have it all figured out and it is often at the expense of our health that we do so. Since my son was born with an incredibly rare Congenital Heart Defect, I’ve been on the frontline of this reality with a host of specialists who are all busy and difficult to schedule or get in touch with. The simple fact of the matter is, as Americans, our healthcare system exerts a certain amount of force, often compelling parents and children to wait excessively long periods of time before they can be properly diagnosed and treated. Here’s a recent example: I needed to get Liam in to see a particular specialist and we get the referral almost same day, but two weeks after the referral, we have received no call to schedule the appointment. So, I call and learn they are back logged 6 months and the nurse clinician who determines which kid sees which specialist is on PTO until nex...

After a really great anatomy scan last week for our third child, the universe felt the need to throw us a confirmed curveball. I say confirmed because we have been watching some blood panel levels since I started experiencing itching in the palms of my hands and feet at around 12 weeks. Now 7 weeks later, my slightly elevated levels have doubled even on a medication that is supposed to help. The docs call it “intrahepatic cholestasis of pregnancy” (ICP) and it’s not supposed to present until the 3rd trimester, yet here it is, putting our family back into an uncertain season of anxiety and worry.  One of the biggest risks to this pregnancy-induced liver condition is stillbirth, so after initially being surprised by the news of a third child in our future, we are now faced with the possibility of never meeting her. Logan and I find ourselves in this protracted season of being continually reminded this world is indiscriminately cruel. It sometimes feels like we’re playing against an ...

We’ve been home for seven months- longer out in the world than within the confines of a hospital. In many respects, we have found a rhythm. It’s syncopated, often sounding like a trumpet taking a tumble down the stairs, but it’s jazzy and there are fun bits. Like the notorious genre, it’s busy and difficult to play.  There are layers to my life now that are even more complex than all of Liam’s therapies and doctor’s appointments- this is a season of reconciliation with my birth mom even as she is dying of cancer. And we are expecting an unexpected joy- a third baby we always wanted but had given up on following Liam’s diagnosis. Getting through the first trimester was challenging on many levels- nausea was a big factor as was the emotional and spiritual energy required to reconnect and care for my mother. Lingering on the edge of consciousness was the daily worry of how the baby was doing- would we make it through the trimester? Will he/she have a heart defect like Liam? Even as ...