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 3: The Plan

Francie’s birth would require the presence of four teams either in the room or on call: Mary Birch perinatal, Rady’s cardiomyopathy, Rady’s heart surgeon, and Mary Birch advanced life support. These teams spanned two hospital systems. We had met with each team to understand their role and build a plan.

The Plan - Part 1: Induced Vaginal Delivery

Initially, we were convinced that a delivery this serious would result in an automatic C-section but were delighted to find out an induced vaginal delivery was on the table. This was critical to our plan. We were hoping for Laura to have a precious minute with Francie through a delayed cord clamp before being whisked in a tunnel from Mary Birch to Rady’s where I would go with Francie, leaving Laura behind.

We understood that complications during labor, specifically decelerations in Francie’s heart, could result in an unscheduled C-section. This would sideline Laura for days and limit her ability to make the trip to Rady’s to be with Francie. Nothing seems more painful than a mother watching her newborn be whisked away with no ability to follow.

Knowing we would separate after birth, Laura and I worked hard to discuss every scenario so we were aligned. If Francie were to take a bad turn, would I FaceTime, or would I stay present with Francie? What about baptism? What about ECMO (baby life support)?

The Plan - Part 2: The Critical Moments After Birth

Francie would be moved to the heater, cleaned, and evaluated. If she was limp, lacked color, failed to cry, had poor vitals, or was struggling to breathe, we expected an oxygen mask to be applied. If passive air didn’t help, then she would be intubated. If intubation failed, then we knew the team would normally progress to chest compressions and epinephrine. That was where we would draw the line and ask her to be brought back to us. No chest compressions. No epinephrine.

After eight weeks of stability, we felt optimistic that we could meet her. Everything after that was unknown.

The Plan - Part 3: To Transplant or Not?

Our goal was to deliver a stable baby and move her to the cardiothoracic ICU where a team of specialists could keep her stable while a battery of tests were run to establish a long-term plan. We knew that they needed so many tests she would likely require a blood transfusion. Was there brain damage? Genetic markers? Incremental surgeries that could help? Was she a good candidate for a transplant?

We were prepared to list her on the transplant list within forty-eight hours of birth. Over the last eight weeks, we’d grown more comfortable with the idea, if we felt we could keep Francie’s quality of life intact.

We knew a heart transplant would likely require six to twelve grueling months of waiting. Getting to surgery would be the hard part.

Here are a few fun facts about transplants:

  1. Babies under the age of two have a surprisingly high success rate with heart transplants. Because babies don’t have mature immune systems, they have a lower rate of rejection and can match across blood types.

  1. Newborn heart donors are very rare. Try wrapping your head around the reality that hoping for a transplant means hoping the child of another parent dies. Drownings are an example of a common donor. We now feel lucky to be heading into summer pool season.

  1. A heart transplant for an adult typically lasts ten years. A heart transplant for a kid under two can last thirty-five years or more. In fact, Baby Moses, the first baby to receive a heart transplant, is thirty-seven years old and still living on the same heart today. (That transplant was done up the freeway at Loma Linda, and our cardio team trained under that surgeon.)

  1. Heart transplants require lifelong medication to help prevent organ rejection, and there’s a lot of daily medication to take. Some of this medication increases the risk of cancer and other organ failure.

The prospect of waiting months for a new heart only to begin a lifetime of endless worry, doctor’s appointments, and medication was overwhelming. For me, the hardest day in the last eight weeks had been touring the cardiothoracic ICU and seeing kids hooked up to life-saving machines, waiting for a heart. I still remember walking past a room with a seven-year-old and hearing her wail. It’s not a wail you’d ever hear at home. It’s not a place you want to be. But, if Francie wanted to fight, if God gave us this path, we were ready.

We prayed for clarity, that baby Francie would show us what she wanted. If she was born without any fight, we would focus on a short, peaceful time. If she came out kicking and screaming, we were ready to put her on our back and climb a mountain together. It’s the murky middle that terrified us.

Nevertheless, we had our plan. We had prepared for everything.

We were ready to induce on the evening of June 20, and deliver on the twenty-first.

Dad Lesson #3: Always have a plan.

Written by
Michael Anderson
View all my posts →

Discover more stories