Contact us

Any questions, tips? Anything else?

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form
Francie's Story

Chapter 2: The 8 Week March

So what happens after your daughter is diagnosed with a life-threatening heart condition at thirty weeks gestation?

Before we get into that, this is a good time to introduce the protagonist of this story, Francie Joy Beck Anderson. Once we got the devastating news, we knew we didn’t want to wait to share her name.

As we quickly learned, it is extremely rare to diagnose in utero. We’re talking about textbooks and seminar slides rare. We built a team of specialists that have exceeded our every expectation (more on this later). We turned on permanent out-of-office messages and fully stepped away from work for the first time in ten years and two other pregnancies. We embarked on a journey through endless appointments, scans, terminology, heart models, and diagrams.

Week One: We were introduced to the term hydrops, a fatal build-up of fluid around critical organs. A small but concerning amount of fluid was detected around Francie’s heart. Doctors prepared us for the likely reality that she would not make it to term and require premature C-section or face a stillbirth.

We were also introduced to the most likely therapy for Francie’s cardiomyopathy: a heart transplant. There’s nothing that teaches you to pray better than hearing your kid will likely need a heart transplant.

Week Two: We found our first win! The fluid build up they were anticipating never appeared. The door opened for Francie to make it to term.

Over the next few weeks, Laura and I became experts on the fetal heart and heart transplants. Our conversations tried to navigate an impossible world of unknowns. What to expect? To pursue a transplant or not? If we did, what would happen to our family? What would happen to our marriage?

Our initial reaction to hearing “heart transplant” was that we would focus on a shorter, peaceful life. From day one, we had a strong sense that we wanted to focus on quality of life, over just life. We were afraid of getting lost in a hospital system that would pursue life at all costs—a hammer that sees a nail. We had difficult conversations about choosing comfort care. We asked endless questions to prepare for what we imagined would be critical minutes after birth. Would we intubate? Would we support chest compressions? Epinephrine? When would we tell the doctors to stop and bring her back to us?

We averaged five multi-hour meetings a week, with Laura going in for frequent fetal monitoring. Each meeting and each specialist provided a new piece of the puzzle. With each passing day, we found clarity.

As we entered week seven, we locked in an induction date: June 21, 2023. We had assembled our team. We had built a clear birth plan. We were ready!

Dad Lesson #2: The only way to eat an elephant is one bite at a time.

Written by
Michael Anderson
View all my posts →

Discover more stories