Fetal Heart Block: Reese’s Story
Meet Reese
Taylor and Caleb Jeter were 21 weeks pregnant with Reese when doctors told them her heart rate was low. Too low. They diagnosed Reese with fetal heart block, a congenital condition where the heart’s electrical impulses don’t conduct regularly.
The couple was living in Germany on Ramstein Air Base, where Caleb was stationed. The military hospital referred them to Children’s Mercy Kansas City, where they could get the complex care they needed — and have a nearby support network in their hometown of Marshfield, Mo.
“Thankfully, the doctors over there found [Reese’s heart condition], and they said, ‘We don't have the equipment we need to help you,’” said Taylor. “They asked, ‘Where's your family?’ We were looking for the closest hospital that would have the appropriate care for her. That's when they referred us to Children's Mercy.”
Within four weeks, Taylor and Caleb were back in the United States and meeting with a multidisciplinary team of Children’s Mercy experts from the Fetal Health Center (FHC), which includes Maternal Fetal Medicine; The Ward Family Heart Center, with Fetal Cardiology, Electrophysiology (EP) and Cardiovascular Surgery; and Neonatology.
“It takes teamwork to manage these babies and be prepared for all the challenges,” said Maria Kiaffas, MD, PhD, Director, Fetal Cardiology. “Everyone brings their piece of knowledge to the table.”
“All these separate teams are one functional team,” said Steven Olsen, MD, Division Director, Neonatology, who served at Ramstein Airbase himself 20 years ago. “We rally around a patient and their family.”
A balancing act: Growth versus stress
“The heart has its own internal electrical system made up of specialized tissue,” explained Dr. William Douglas, MD, cardiothoracic surgeon. Immune conditions can cause antibodies to attack those specialized cells. “Then the upper and lower chambers [of the heart] don’t talk to each other. That’s what was happening to Reese.”
With the help of some medication, Reese’s heart rate was staying in the 50 beats per minute (bpm) range. (Fetal heart rates are usually around 120 to 140 bpm.) The team needed to balance giving Reese time to grow with the ongoing stress such a low heart rate put on her body.
“I really value the FHC’s ongoing dialogue with Neonatology,” said Laura Vricella, MD, FACOG, Fetal Health Center Medical Director. “I’ll often ask Dr. Olsen, ‘What would you rather have: another week of pregnancy for the baby [to grow] versus a baby who is a perhaps a little less stressed?’”
At around 30 weeks, Reese’s heart rate dropped below 45 bpm, too slow to get blood to her entire body. Her team prepared for a C-section and surgery to place temporary pacer wires on Reese’s heart the next day.
took part in the dual delivery and heart surgeries. Within an hour of knowing they needed to deliver, all the key specialists met to strategize. That afternoon, they did a practice walkthrough and .
With a tiny heart and immature cardiac tissue, the heart surgery had to be precise and quick. No one knew how long Reese’s heart rate would hold; they needed to get her into surgery as soon as possible after delivery.
“We wanted to prioritize this being a calm and controlled delivery,” said Kelsey Brattrud, MSN, APRN, FNP-C, Advanced Practice RN II, Heart Center, who helped coordinate the day’s complex logistics alongside Hayley Hancock, MD, Heart Center, who supervised the delivery from the Fetal Cardiology team
When Reese entered the world at just 3 pounds and 6 ounces, she was prepared as well: “She surprised all of us,” said Kelsey. “She was vigorous; she was crying.”
Taylor and Caleb got about 30 seconds with their daughter before she was rushed down the hall. Caleb followed Reese and sent updates to Taylor as she recovered from the C-section. Reese stayed strong throughout her surgery, and the team was able to attach two sets of temporary pacer wires to help regulate her heart rate.
“Reese is going to make decisions for herself,” said Dr. Douglas. “I was so thankful she was stable enough for me to do the surgery with proper care.”
Strong care, strong heart
The family settled in for six weeks in the CICU to prepare Reese for her permanent pacemaker surgery.
Taylor appreciated that the CICU prioritized Kangaroo Care (close skin-to-skin bonding time with Reese), included parents in caregiving and advocated for Reese when Taylor and Caleb needed to rest.
"Every time you ask to hold your child, they’d stop and make sure you had that moment,” said Taylor. “That is really beautiful, and so important for you both.”
The EP team sourced a modified, tiny pacemaker with a lead that would fit Reese’s small heart. When Reese was around 6 weeks old, Dr. Douglas implanted the pacemaker; the surgery went as well as it possibly could.
“Without Dr. Douglas, my daughter would not be here,” said Taylor.
“The CICU [team members] were the unsung heroes of this,” said Dr. Douglas. “They spent many weeks doing all the little things so she could grow and thrive and get to her second surgery. They took care of her all that time without pulling out those pacer wires.”
"You’re not alone”
Reese spent two more weeks in the NICU to recover. Adam Harmon, DNP, APRN CPNP AC, Advanced Practice RN II, Heart Center, explained that the EP team makes sure families feel comfortable with the pacemaker before discharge.
While they were in the hospital, Taylor and Caleb could see how Reese’s heart was doing every second. “When you go home, you’re like...Is she ok?” said Taylor. “Adam always took time out of his day to explain anything. I had a lot of questions, and he’d answer all those in a way that’s easy to understand.”
“A lot of it is telling them, ‘You’re not alone; you have us,’” said Adam, who, along with Lindsey Malloy Walton, DO, MPH, Heart Center physician, stressed the collaborative nature of the EP team. They were both present for Reese’s delivery and will be part of her ongoing care.
When the family went home in early October, they knew they’d have back-up: The EP team remote-monitors Reese’s pacemaker, along with around 300 other . Every day, Caleb and Taylor wave a remote over Reese’s chest to send her pacemaker data to Children’s Mercy.
“We always joke, ‘We gotta scan our daughter now!’” said Taylor.
The pacemaker alerts the EP team if something is wrong, and Taylor and Caleb can request a check if Reese seems lethargic. Every three months, the EP team does an in-depth analysis of all the scanned data, and every six months, they will see Reese in person.
In addition to being monitored by Cardiology and EP, Reese will also have regular check-ups with Neonatology to make sure she’s meeting her neurodevelopmental milestones. The multidisciplinary team will stay in close contact so that as Reese grows and her current pacemaker’s battery wanes in a few years, they can determine when she will need a new device.
Fortunately, the family expects to navigate that upgrade with Children’s Mercy: Caleb has been re-stationed at Whiteman Air Force Base in Knob Noster, Mo., thanks in part to Children’s Mercy advocating for a nearby placement for Reese’s ongoing care. The collaboration will continue for years to come!
“It was really impressive to see the layers of teamwork that came together to make sure Reese’s care was the best that it could be,” said Dr. Malloy Walton.
The MVP of the team? Reese. “Reese herself was a rock star,” said Kelsey. “Given how many concerns we had about her, she really was the star of the show.”