Coarctation of the Aorta and Ventricular Septal Defects: Zoey’s Story

Something wasn’t right, and Jackie Hardy knew it. After bringing her newborn daughter, Zoey, home from the hospital on July 13, 2011, Jackie watched her constantly. 

zoey smilingShe wondered about the big bruise on Zoey’s backside, Zoey’s labored breathing, how infrequently she was awake, how little she ate, and the strange tint of her skin.

“I felt I was being overly cautious,” says Jackie, who lost four babies out of her nine pregnancies. “Because I had lost so many, I thought the pediatrician would look at me like, she’s a crazy mom, nervous about everything.”

But by the third day, Jackie was certain her daughter was in danger and told her husband to drive them to the ER. Her instincts were right on — if they hadn’t acted so quickly, it’s likely Zoey would have died that night.

Diagnosing Zoey

The closest ER was at Jersey Shore University Medical Center, about 40 minutes from their house. The Jersey shore traffic extended the ride to an excruciating two hours, and by the time they got to the ER, Zoey was in cardiogenic shock.

“She looked lifeless. She wasn’t moving. The cardiologist came in and started rattling off her defects. I walked into the hallway and started screaming,” Jackie says. “My fear was that the worst was going to happen again. I was not prepared to lose another child.”

Zoey had coarctation of the aorta and three large ventricular septal defects (VSDs). Her body was shutting down fast.

The ER team at Jersey Shore arranged for her to be airlifted to CHOP — but the process of preparing her for the journey brought its own risks.

“The doctor told me that if she coded, he wouldn’t be able to bring her back,” says Jackie. Fortunately, the team at Jersey Shore was able to stabilize Zoey and place her in an isolette for the trip to CHOP.

From the Jersey Shore parking lot, the Hardys watched the helicopter take off and fly away. Nearby, a woman told her family to pray for whomever was inside that helicopter. Jackie and her husband said a prayer as well. Then they got in their car and started the long drive to CHOP.

“It was the longest car ride of my life,” she says.

Surgery at CHOP

The Hardys had never been to CHOP before, but once they arrived, they sensed a break in the tension and fear that had been building inside them.

“As soon as we got to her room, there were so many people surrounding her," Jackie says. "I felt safe. I felt a sense of peace. It was the first time I heard someone say that she had a fighting chance.”

Zoey was indeed in good hands: The Cardiac Center’s team of surgeons, cardiologists, anesthesiologists, nurses and others has vast experience caring for children with congenital heart disease. Each year, more than 2,000 children, many of whom have very complex medical needs and require care from many different specialists, are admitted to CHOP for cardiac care.

Zoey's first surgery was performed by Thomas Spray, MD, chief of the Division of Cardiothoracic Surgery, on her third day at CHOP.

“We saw her an hour after the surgery,” says Jackie. “It was so scary. She was still intubated, and she didn’t look like the little baby I gave birth to.”

Zoey had other complications that required her to stay at CHOP for a month after that first surgery. She had several feeding issues and suffered from pyloric stenosis, a narrowing of the stomach muscles, and needed another surgery. She went home three days later.

Open heart surgery 

On Sept. 5, 2012, the Hardys brought Zoey back to CHOP for open heart surgery to repair her three VSDs.

“This time around, when she woke up she looked at me and started to smile,” says Jackie. “It was a huge smile, like she was saying ‘wow, it’s you mommy!’ She was so happy to see us.”

Zoey’s doctors expect that she’ll be able to live a pretty normal life, but she still has some battles ahead. She was diagnosed with autoimmune neutropenia, which inhibits her ability to fight off infections, and receives injections to build up her neutrophil count.

She is steadily improving and just started saying her first words. She continues to come to CHOP for follow-up every few months, and when she gets older, she will have the opportunity to transition her care to the Philadelphia Adult Congenital Heart Center, a joint CHOP and Penn Medicine program that cares for adults with congenital heart defects.

The Hardys are deeply grateful to the Cardiac Center team for the thoughtful and expert care their daughter has received.

“They saved her life," Jackie says. "Between her heart, her stomach and her autoimmune disease, everything was found right away. If she had a problem, they had a fix for it.”

Jackie also credits her brave young daughter: “I gave birth to my hero. From day one she came out fighting. She fought for her life … She is so strong. She didn’t let anything get her down.”

Video update from Zoey and her mom

Catch up with Zoey and her mom to find out how Zoey is doing today, and hear about their experiences in their own words.

Originally posted: August 2013