Coarctation of the Aorta with Aortic Arch Hypoplasia: Jude’s Story

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Jude is a happy and active 2-year-old who loves to play with cars, trucks and superhero figures. He was born with a severe heart defect, and procedures at Children’s Hospital of Philadelphia (CHOP) helped save his life.

Jude At her 20-week ultrasound during her third pregnancy, Natalie found out that her unborn child had a condition called coarctation of the aorta with aortic arch hypoplasia. The doctor told Natalie and her husband, Joe, that even if their baby survived to term, he would probably die soon after birth.

Finding hope at CHOP

The following week, Natalie and Joe traveled to CHOP from their home in Allentown, PA, to meet with Karl Degenhardt, MD, an attending cardiologist with the Cardiac Center and Fetal Heart Program.

At CHOP, Natalie had another ultrasound and a fetal echocardiogram. Dr. Degenhardt confirmed the original diagnosis, and recommended that Natalie deliver at CHOP so that her baby could get immediate medical care.

Jude was born in CHOP’s Garbose Family Special Delivery Unit, a first-of-its-kind delivery unit for mothers carrying babies with known birth defects. After his birth, Jude was quickly taken to the Evelyn and Daniel M. Tabas Cardiac Intensive Care Unit (CICU).

“He looked like a normal baby, but with very purple coloring,” Natalie remembers.

That night, Aaron DeWitt, MD, a cardiologist in the Division of Cardiac Critical Care Medicine, told Natalie and Joe that Jude was showing signs of heart failure. For the next two days, Jude was intubated and connected to different machines to stabilize him.

Procedures to correct heart defects

When Jude was 5 days old, Andrew Glatz, MD, an interventional cardiologist, performed a cardiac catheterization to get a better understanding of the anatomy of Jude’s heart. During the catheterization, he was able to identify and correct a problem with the aortic valve, which had not been opening fully.

Three days later, Thomas Spray, MD, Chief of the Division of Cardiothoracic Surgery, performed open-heart surgery to widen Jude’s aortic arch. Jude recovered quickly from that operation. The two procedures appeared to resolve many of his problems, and soon he was able to go home.

Jude did well for the next three months. But when he caught a virus and didn’t improve after five days in his local hospital’s pediatric intensive care unit, Natalie and Joe called their team at CHOP.

Returning to CHOP

At the recommendation of his CHOP medical team, Jude’s local physicians performed an echocardiogram. The results showed that Jude had severe left ventricle dysfunction, so alarming that the team arranged for Jude to be flown by medical transport to CHOP.

At CHOP, Yoav Dori, MD, performed a cardiac catheterization and did a balloon dilation of the coarctation of the aorta. Dr. Glatz dilated the aortic valve to reduce the pressure of the left ventricle, and Jude was put on a combination of medications to improve his circulation. Dr. Glatz also performed another catheterization to take pressure off the left ventricle of Jude’s heart.

Plans for a heart transplant

During the catheterization, Dr. Glatz found that the left side of Jude’s heart was functioning poorly. Jude’s doctors began to discuss the possibility of a heart transplant with Natalie and Joe.

“We were devastated,” Natalie remembers.

“I was worried that we were at the beginning of the end,” says Joe.

Jude was listed for a heart transplant — and his medical team worked with Joe and Natalie to find a way to bring him home.

“If time was short, I wanted us to be together,” Joe says.

A miraculous recovery

But before they left the Hospital, Jude had another echocardiogram, which showed that his heart function had improved. He also looked more alert, and his color looked better.

Jude’s parents brought him back to CHOP regularly for checkups. His condition continued to improve, and soon he was crawling and eating solid foods. In December 2016, the transplant team, along with Natalie and Joe, decided to take Jude off the transplant list.

Jude today

Now 2 1/2, Jude likes to play with cars and trucks — and he loves to imagine himself as a superhero! He wants to do everything his older brother does, and when the weather is warm, he goes in the pool and plays in the sand, building sandcastles.

Jude is no longer on any medications for his heart, and he returns to CHOP every three months to see Dr. Degenhardt.

“Dr. Degenhardt is just amazing,” says Natalie. “He’s been right by our side through everything. He always had a positive outlook, yet he never gave us false hope.”

From the cafeteria staff to the nurses and doctors to cardiac leadership, they took care of our whole family. Every time I go to CHOP, I am in awe.

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