When Your Unborn Baby Has a Broken Heart

I wrote today’s post in February of 2007—the day doctors discovered our youngest son’s heart condition by fetal echo, at 20 weeks gestation. I didn’t have a blog back then, so I just filed it away and never showed it to anyone. 

As I was driving to the bus stop this morning, I remembered that I had written it. I decided not to edit it, even though I feel my writing has matured since then. But if you’re walking through a fog of fear and uncertainty today, perhaps it will encourage you.

I should also add that, after 2 open heart surgeries and too many other procedures to count, our son is a very healthy, energetic and rambunctious boy (as you can see in this photo). 

Today is his 5^th birthday.

* * * *

February, 2007: Today, Joy had a fetal echo performed at the Children’s Heart Center — a place, and a team of people, we have come to know very well over the last 7 years of visits and procedures with Elli.

The mood was light. Sherry greeted us with a smile. She had been the surgical nurse at two of Elli’s heart surgeries so many years ago, and had been with us each step of the way. As strange as it may sound, the cardiology clinic at Children’s is a familiar place to us, with familiar faces everywhere.

Joy laid on the table and the technician started moving the probe around her belly. Almost instantly we saw it. The baby was a boy. Oh, how we smiled and celebrated! We had been careful not to cast our hopes one way or the other, but were overjoyed to know that the boys could share a room.

For about 30 minutes, the technician took careful measurements and the conversation was light, alternating between personal and procedural chit chat. “I have two kids, and I always call my kids the wrong name,” she said. “There are the 4 chambers. Ooh, there’s his little foot!” 

The technician left to take the data to the Cardiology Fellow in the Heart Center who had performed past fetal echoes for us. We knew the drill. The doctor would take a look in another room and drop in to let us know how everything looked.

When the doctor returned, he shook our hands with a nervous smile, plopped down somewhat uneasily on the stool at the echo machine, and said, “I have some concerns about the baby’s heart, and I want to take another look myself at some things.”

He re-prepped Joy and carefully maneuvered the wand around on her belly, holding it still with his face up close to the computer screen, frowning, then moving it again for another angle. The baby was squirmy, which was complicating his efforts to get the perfect angle. 

He didn’t speak for what must have been 15-minutes as he did this, except for asking 2 questions.

“You did the genetic testing after Elli, right?”

“Yes,” we answered. “It all came back inconclusive.” 

“That’s what I thought,” he said. “How far along are you?”

“Twenty weeks tomorrow,” Joy answered.

Finally, he carefully draped the wand’s cord around his neck and wiped the jelly off his hands.

I can’t remember his exact words, but he called it “pulmonary atresia.” I only remember certain words and phrases like “complex” and “unfortunately” and “more complex than Elli.” I didn’t think it got more complex than Elli.

He also informed us that if we wanted to terminate the pregnancy, we had about a 3-week window to do so. He made it clear that he had to say that, and was neither for nor against it.

We had been here before. It was so much of the same, yet so different. With Elli, we didn’t know anything about her diagnosis until she was about to die at 3 days old. 

With this little boy, we know ahead of time that he will be sick. He is not sick now, though. None of the complications of pulmonary atresia affect someone as long as they are attached to a placenta. It is only when he makes the transition to breathing on his own that the complications will come. In that sense, it is good to know he will be whisked away when he is born, and will get the best care possible.

There’s so much we don’t know. Yet, at the same time, there’s so much we do know. We have a diagnosis at 20 weeks gestation. We have access to great medical care and the latest technology. 

Yet we are careful not make the bells and whistles our “capital H” hope. We must not let doctors de-throne Christ in our hearts.

Jesus prayed, “Lead us not into temptation, but deliver us from evil.” He didn’t pray, “Lead us not into chromosomal abnormalities, but deliver us from the odds.” Physical infirmities are a valuable tool by which we sharpen our dependence and our view and our love and our reverence for God. Illness is not the most horrifying manifestation of the fall on humankind. Sin is.

And so our prayer is that God would lead us not into the temptations that come with this approaching test, that He would shape us into a closer likeness to His Son, that we would make the surpassing worth of knowing Him our focus, and our joy.

Surgeries and big decisions are on the horizon. We have already begun asking specifically for wisdom around his care.

God is in control, and our best response is to cast our Hope in Him.

Though the fig tree should not blossom, nor fruit be on the vines,
the produce of the olive fail and the fields yield no food, the flock be cut off from the fold and there be no herd in the stalls, yet I will rejoice in the LORD; I will take joy in the God of my salvation. GOD, the Lord, is my strength; he makes my feet like the deer's; he makes me tread on my high places.

Habakkuk 3:17-19