Cecelia: Expert Care for Fetal Heart Block Before and After Birth

When Brittany and Nicholas’ unborn baby, Cecelia, was diagnosed with fetal heart block at 24 weeks gestation, their lives changed immediately — in the most literal sense of the word. They lived in Montana and when their doctor first suspected the heart issue, he told them to leave for Children’s Hospital Colorado right away.

The family started the 12-hour drive to our Colorado Fetal Care Center right after the appointment. They didn’t know much at that time. They didn’t know about the condition or if they would have an appointment when they got here. They didn’t know what to say to each other. They didn’t know if they should have any hope.

Fetal cardiology care at the Colorado Fetal Care Center

Brittany and Nicholas arrived in Denver after midnight and had an appointment with our full team of fetal care experts at 8 a.m. Their doctor in Montana set the appointment up as they drove to Denver. Cecelia’s heart rate was about 55 beats per minute (120 to 170 is considered healthy). She also had fluid buildup that our doctors worried might turn into hydrops, a potentially fatal condition. Our fetal cardiology team gave Cecelia steroids and other medication to protect her heart and reduce fluid buildup. They monitored her and Brittany closely to make sure Cecelia’s heart rate was in a safe range.

At one point, when Cecelia’s heart rate fell below 50 beats per minute, our fetal cardiology team gave Brittany medication to try to raise it. While this helped Cecilia, it also raised Brittany’s heart rate a little too much, forcing her to spend seven weeks on modified bedrest to protect her heart from strain and keep her heart rate down.

The goal was for Brittany to remain pregnant for as long as possible to give Cecelia the best chance. Our fetal care experts monitored Brittany and Cecelia closely and prepared them for delivery. While everyone waited, Nicholas went back to Montana and brought their sons down to temporarily live close to the Colorado Fetal Care Center. They celebrated Christmas and New Year’s Day together in anticipation for Cecelia’s arrival.

Preparing for birth and heart surgery

As each week passed, the family gained a little more hope, but it was still a tense time. Cecelia needed to grow big enough so the surgeons could implant a pacemaker, if necessary. And she did.

Cecelia was born at 36 weeks and three days, with her parents and about 20 providers waiting to meet her. She went into cardiac surgery immediately and received a pacemaker to help her heart beat correctly. Nicholas got to see her briefly and touch her hand before her heart block treatment. The surgery went well, and after four hours, Brittany and Nicholas got to officially meet her for the first time. They waited another 24 hours to hold her. It was the most hope they’d felt in months.

“I finally felt like this was going to be OK,” Brittany says. “Being able to meet her, hold her hand and hold her were amazing feelings.”

Cecelia spent two and a half weeks in the Cardiac and Neonatal Intensive Care Units to recover, grow and learn to eat on her own before going home to meet the rest of her family in Montana. During her first years of life, our fetal cardiology providers worked with Cecelia’s doctors in Montana to make sure she was progressing as expected.

Thriving with fetal heart block

The family has since moved to Florida, and as part of the move, they began seeing a new primary care team close to their home for Cecelia’s heart care.

“It was very emotional leaving Children’s Colorado as our main provider,” Brittany says.

But Brittany is comforted by our team’s stamp of approval for Cecelia’s current doctors — and because she’s doing so well. She’ll continue to see cardiologists to monitor her heart and will eventually need to replace her pacemaker. But in daily life, Cecilia can do everything she wants, from camping and riding horses to swimming, skiing and much more.

Cecelia is a happy, feisty, independent little girl who loves to chase her brothers, draw, sing and cuddle with her family. She celebrated her second birthday at Disney World and recently enjoyed a family trip to Scotland to visit the land her ancestors used to live on.

“We’re super thankful for having such amazing doctors at Children's Colorado who were able to care for our daughter with a very serious medical diagnosis and give us a miracle baby who we get to love and cherish every day,” Brittany says.