Mom’s Intuition Helps Save Newborn With Rare Heart Condition

At just 10 days old, baby Eleanor (Ella) needed heart surgery. Doctors diagnosed her with Shone’s complex, a rare heart condition present at birth that indicates at least three defects that affect blood flow in the left side of the heart. Ella weighed five pounds, and her heart was the size of a walnut.

Call it a mother’s intuition when Christan Bury knew something was wrong after Ella had two poor feedings. Christan was pumping breast milk and using bottles to feed newborn Ella and her twin brother Jack.

After a C-section birth, Christan and the twins went home on a Sunday in April 2022. Everything was fine at first. “They ate well and got stronger, but 10 days in, Ella started choking on her bottles,” Christan says. “I was a tired, nursing and happy mother, but I was also experienced,” says the 37-year-old mom of five.

“Because Ella had two poor feeding sessions with rapid breathing, I knew something wasn’t right. With babies, you don’t have a good eater who suddenly turns into a bad eater.”

Christan’s gut told her to take Ella to the pediatrician’s office, where a faint heart murmur was not easily detected. That led to the emergency department at Cleveland Clinic Hillcrest Hospital for a chest X-ray which showed Ella’s heart to be enlarged. Additionally, her lungs were filling with fluid, so she had trouble breathing.

Critical care transport took Christan and newborn Ella to Cleveland Clinic Children's in Cleveland, Ohio, for an echocardiogram. “I knew then that it was serious,” Christan says.

The echocardiogram showed doctors that Ella had Shone’s complex. The clinical staff started her on medications. “At that point, I knew Ella would need a major surgical intervention,” Christan says.

Shone’s complex accounts for less than 1% of all congenital heart diseases and affects how blood flows into and out of the left side of the heart. The multiple sites of blockage in the blood flow through the left side of the heart differentiate Shone’s from other isolated heart defects.

Pediatric cardiologist Holly Nadorlik, DO, was on call that night and saw the echocardiogram results. After seeing the first few images, Dr. Nadorlik knew something was wrong. “There was a severe narrowing of the aorta,” she remembers. “Ella needed an IV medication to open this area up. It was very critical.”

Peter Aziz, MD, a pediatric cardiologist and electrophysiologist, was rounding in the pediatric ICU that night. He told Christan a committee of physicians and other clinicians discussed the surgical options for Ella.

He said they could fix just the aorta, but Ella would eventually require more surgeries to repair the remaining defects. The other choice was riskier but would repair all the defects.

Christan and her husband Luke, 38, asked Dr. Aziz if he had children. He said yes and that if it were his child he would opt for the full surgery.

“My husband and I had such clarity,” Christan says. They were terrified, but they trusted the science and had faith in the surgical team, which was led by pediatric and congenital heart surgeon Hani Najm, MD.

When Christan and Luke met with Dr. Najm, he assured them he could do either surgery and that Ella would survive.

The complete cardiac repair involved enlarging the aorta, the main artery of the heart, repairing a ventricular septal defect (a hole in the heart), and repairing two heart valves, the mitral valve and the tricuspid valve. “I want your daughter to have the best quality of life,” Christan remembers Dr. Najm explaining. That would result from the surgery to repair all the defects.

“I sit with the parents and explain the options,” says Dr. Najm. “I give them confidence and trust, especially the mothers who just went through pregnancy, delivery, and now have a newborn baby who needs surgery. It is a lot for parents to take in.”

Christan and Luke consented to the more complex surgery. “There are moments in your life when you want to be an expert,” Christan says, “but I knew I was not, so we trusted the experts.”

About 30 hours from the time Christan sensed something was wrong, Ella had successful open-heart surgery, which included a full repair of her heart defects. Dr. Najm says the eight-hour surgery involved four surgeons as part of a 10-person team of medical professionals in the operating room.

It was Mother’s Day 2022 when Ella was transferred from the ICU to a regular floor in the hospital, Christan remembers. “That was my best Mother’s Day gift. It really provides perspective on what is important.”

Christan says Ella progressed quickly after her surgery and was home in six days, even though they had prepared for a possible five-week hospital stay. She recalls it was a very difficult time for both her and Luke as they worked together to care for Ella, her twin brother, and their other children.

Christan talks about her gratitude for family and friends, especially her parents who were there to lend helping hands when Luke and their three older children became sick. Her mom got up at night to feed Jack every three hours while Christan fed Ella.

Christan also experienced postpartum anxiety. “I crashed a couple months later and saw a psychiatrist to deal with everything we had been through. There is no stigma,” she says. “I needed to prioritize my mental health. I couldn’t handle it on my own.”

Dr. Nadorlik continues to see Ella as a patient for follow-up visits. Ella, who is now 3 years old, is thriving and doing well. Christan describes her as strong, feisty and stubborn.

“There is nothing better or more gratifying than seeing the happiness in the eyes of a mother after her baby’s surgery,” Dr. Najm says. “It is incredible to see the impact, to be able to enhance the quality of life for babies and their parents.”

“Ella is here today because every single physician, nurse and healthcare professional took the time to listen,” Christan says. “I am so thankful Ella received the care she did. It is truly unparalleled.”

Reflecting on their journey Christan says, “We can handle a lot as a family, and we know what is important. We have five healthy and rambunctious kids.”