Declan: A Nurse Experiences a Coarctation of the Aorta as a Parent

Seeing the other side of the coin

As a nurse in the Children's Hospital Colorado pediatric intensive care unit (PICU), Bethany has had to deliver both good news and bad to parents. She never thought she would be on the receiving end of that news. When her son, Declan, was diagnosed with a coarctation of the aorta, she realized that her medical knowledge could be both a benefit and a challenge.

“This was really my first encounter being on the other side of the coin,” Bethany says.

When she would overhear a doctor requesting a test, her mind jumped to why they might want that test and all the medical implications it could have. On the other hand, she knew her medical team well so she had complete confidence that everything they were doing would be entirely for the health of her and her baby.

Bethany found out that it's not easy to be on the medical side or the patient-family side. And she experienced what often frustrates both sides — not knowing.

A partial abruption leads doctors to a congenital heart defect

Bethany’s pregnancy was going well until around 34 weeks when she woke up in the middle of the night and noticed some bleeding. She went to the ER where she learned she had a partial abruption, which happens when a portion of the placenta separates from the uterine wall. This can sometimes affect the delivery of oxygen and nutrients to the unborn baby.

Bethany’s doctor referred her to meet with our fetal cardiology team at Children’s Hospital Colorado, Colorado Springs. Fetal cardiologists provide care for babies before birth who might have a congenital heart defect. On one of the ultrasound scans to examine how severe the abruption might be, Bethany’s doctor noticed something else — a faint indication of a possible coarctation of the aorta, also known as a coarc. A coarctation of the aorta is a congenital heart defect (CHD) in which the aorta, the body's main artery, narrows, obstructing blood flow. Surgery is usually necessary to avoid major complications related to the decreased blood flow.

Bethany had five more ultrasounds after she came in for the abruption, as well as a fetal echocardiogram — a more detailed type of imaging. Doctors did not see another sign of the coarc on any of these scans.

The abruption that she initially came in for resolved but the team continued monitoring Bethany and Declan closely to see if the coarctation of the aorta would be present at birth.

Declan arrives healthy but the coarctation of the aorta returns

After doctors thought Declan would be born prematurely, he surprised everyone by entering the world at 40 weeks and 5 days, weighing 8 lbs., 15 oz. Doctors cleared him for a regular delivery since, at that point, there was no sign of the coarc. However, doctors remained cautious because of the one scan before birth that showed a potential coarc and they wanted to give Declan another echocardiogram before he went home. The echocardiogram revealed a larger-than-usual patent ductus arteriosus (PDA), which is a hole between the aorta and pulmonary artery that lets oxygen-rich and oxygen-poor blood mix. This hole is usually small and closes naturally after birth. Doctors monitored the PDA, because it was larger than usual, but it did eventually close. And after it did, doctors were able to finally confirm that Declan did indeed have a coarc.

Just a few days after Declan was born, he transferred to Children’s Hospital Colorado Anschutz Medical Campus, Aurora for heart surgery.

“Right away, we got really exceptional care,” Bethany says. “Honestly, the whole experience was amazing. I’ve been on the other side of this, but when you’re experiencing it, it’s different. It’s just very, very encouraging. When you work for an organization, you just want to be able to say that the care we provide is really exceptional. After this experience, I feel confident in saying that we provide very exceptional care.”

Preparing for Declan's heart surgery

Bethany and her husband, Jon, stayed with Declan for a couple days in the hospital to help get him in the best shape for surgery. She says the staff, nurses and doctors did everything they could to make them feel comfortable with the plan the team had created, especially Emily Downs, MD, Declan’s surgeon.

“Dr. Downs did a phenomenal job of explaining everything about the surgery,” Bethany says. “She explained the exact approach, potential complications and what she does to prevent those complications. You could also tell that she was just incredibly compassionate and really loved her job. She was very personable and you could feel that she didn’t just care about the surgery, but really truly cared about the patient and family too.”

Declan’s heart surgery was successful and Bethany says he's about as happy as a baby can be. He’s healthy, strong and everything looked great on his last two echocardiograms. Bethany keeps thinking about the very first scan before Declan was born that showed a potential coartation of the aorta and his care team's attention to detail.

“Because of that one scan, we ended up getting Declan an echocardiogram after he was born,” Bethany says. “I keep thinking, ‘I am so grateful for that one hospital stay because this whole story could have been very different if we had gone home before the coarc was discovered.’”

The importance of compassionate care and addressing basic human needs

Even though Declan’s medical journey took Bethany on a rollercoaster, she said there is no other hospital where she’d want Declan to receive care. Going through the experience as a parent also gave Bethany a deeper understanding of the stress and challenges families face.

“It gave me a lot of grace for families,” Bethany says. “And it made me more conscientious of the language that we use and the way we explain things.”

Although Bethany has always checked on basic needs (food, sleep, water) as part of the care she provides to families, this hospitalization helped her realize the full impact these details have on managing hospital stress.

Bethany’s experience helped her identify things in hospitalization that she had always considered prior to this but some doctors and nurses may not always think of.

“One of the biggest stressors for me was being separated from our 2-year-old at home,” Bethany says. “The hospital stay I had at 34-weeks was the first time I’d ever spent a night away from her. It was really difficult for me and even more difficult for her.”

Now, among other things, Bethany says she’s especially conscientious about other children at home. She hadn’t always recognized how impactful being torn between hospital and home was.

“Experiencing the birth of your baby alongside a cardiac surgery is incredibly stressful, no matter how prepared you might be from prenatal diagnosis,” says Dr. Downs. “Our goal as a care team is to help families through this challenging time in every way we can. We try to explain things in friendly ways, make sure things don’t feel rushed and generally just try to take that stress level down a notch or two.”

Bethany has always valued clear communication, consistency and empathy in her role, but walking this journey as a parent reshaped her perspective. She now understands firsthand how powerful compassion can be, and the impact of even the smallest acts of kindness.