Baby Hayes’ story: A positive outcome after an unexpected heart surgery

When Nikki Young and her boyfriend, Laitin, found out they were expecting, they were surprised and overjoyed. Since this was Nikki’s first pregnancy, she wasn’t really sure what to expect – except for the usual morning sickness, feeling tired all the time, and other symptoms that often come with pregnancy.

Despite the discomforts of carrying a growing baby in her womb, Nikki’s pregnancy was smooth sailing. Her baby’s weekly anatomy scans were normal. There were no signs of abnormalities – no heart issues at all. Her son was healthy and growing and developing like he should and everything was right on track.

As Nikki approached her son’s due date, her plan was to have a natural birth. Instead of being induced, she wanted her baby to be born on his own, whenever he decided to make his grand debut. When she was two weeks past her due date – and tired of being pregnant – Nikki opted to have an induction. At 42 weeks, she gave birth to Hayes on December 1, 2021, at Ochsner Medical Center in Baton Rouge.

“Hayes was a big baby,” said Nikki. “He weighed a whopping 8 pounds, 2 ounces and was 22 inches long. Shortly after my son was born, he stopped breathing. The nurses said he was probably stunned from being in the birth canal for so long,” explained Nikki. “The nurses had to hurry up and cut the umbilical cord and put him on oxygen because he was turning blue, and they suctioned him. He finally started crying but it took him a few minutes to start screaming. At first, it was terrifying not hearing him cry, but I was relieved when he was able to breathe on his own. We spent three days in the hospital before I could take him home.”

As a new mother, Nikki enjoyed spending quality time with her son – rocking him to bed, nursing him, bonding with him, and getting to know this special little guy who entered her life. Nikki and Laitin were adjusting well to parenthood and enjoyed watching their son grow every day. Hayes was a healthy baby but then when he was around two months old, Nikki noticed some strange symptoms that alarmed her.

“It was like any normal day with Hayes,” said Nikki. “We were both taking a nap on the couch when Hayes started fussing. I nursed him because he usually cries whenever he is hungry. When that didn’t work, I walked around with him, and when I looked down at him, he was sweating profusely. It was so weird because it was cold outside. When I took his clothes off to wipe down his sweat, his scream got worse and then it turned into weird grunting noises. His eyes rolled back, and he turned pale and went limp. I was in total panic mode. My sister was on the phone with 911 to find out what we needed to do. I gave him CPR and chest compressions. About that time, the fire department arrived. They used an AED defibrillator and shocked my son three times. A few minutes later, Hayes started breathing again.”

Still unsure what caused her son to sweat a lot and stop breathing, Hayes was immediately airlifted to a children’s hospital in Baton Rouge for further observation. The doctors there told Nikki and her mother that the baby’s heart was weak, and it was not contracting like it should. So, the next morning, Hayes was life flighted to Children’s Hospital New Orleans where he could receive higher level cardiac care.

“I was going through a roller coaster of emotions,” said Nikki. “I was confused about everything because all this time, my baby was healthy. I had no complications with him during my pregnancy. After he was born, he was doing well. When he turned two months old, that’s when things took a downward spiral. It was difficult for me to process everything. I just had to take things one day at a time. When we arrived at the hospital around 4 am, the helicopter was already there at Children’s Hospital. I hadn’t slept a wink for three days. I think I was just running on adrenalin. I just needed some kind of good news and then I could relax and feel calm that my baby was going to be OK, said Nikki. “After Hayes was admitted to the CVICU, his doctors and nurses monitored him closely. After conducting an echocardiogram, the doctor told me that my baby had a congenital heart problem where he had four leaflets instead of three on his aortic valve. Every time it would flap open to push out blood, it got in the way of the main coronary artery. So, it was contradicting itself. As a mom, I was relieved that we finally knew what was wrong with my baby.”

Hayes was diagnosed with quadricuspid aortic valve (QAV), a rare congenital heart defect characterized by the presence of four leaflets instead of the usual three found in the aortic valve. Along with this condition, he had stenosis or narrowing of the left coronary artery. Realizing that Hayes would need surgery to repair his congenital heart defect, Nikki met with Dr. Frank Pigula, chief of pediatric cardiothoracic surgery and co-director of the Heart Center at Children’s Hospital New Orleans.

“Dr. Pigula was very reassuring and explained how he would repair my son’s heart problem,” said Nikki. "He answered my questions and concerns that I had about Hayes’ heart surgery, and that put my mind at ease. I knew Hayes was in the best place to receive care. I was praying that everything would be fine.”

On February 24, 2022 – a week after his heart incident – 2-month-old Hayes had his first heart surgery. Dr. Pigula performed aortic valve reconstruction surgery. He repaired the aortic valve by turning it from a 4-leaflet to a 3-leaflet valve and opened up the left coronary artery to improve blood flow to the heart.

“This is an unusual heart abnormality and it is not something that is easy to diagnose. Once Hayes had the echo, we were able to confirm the diagnosis,” said Pigula. “To open up the coronary artery, we turned his 4-leaflet aortic valve into a 3-leaflet valve, and I was very pleased with how this turned out.”

After surgery, Hayes was gradually weaned off the sedation. He spent another week in the CVICU at Children’s Hospital before he was strong enough to return home. He spent two weeks at Children’s – a week before his heart surgery and a week after recovering from surgery. As a strong heart warrior, he pulled through with flying colors.

“I was happy when my son was ready to come home but nervous too,” said Nikki. “When I was with him at the hospital, he was hooked up to monitors all the time that read his heart rate and oxygen. At home, I knew I wouldn’t have those monitors that checked on his vitals daily. So naturally, my anxiety started coming back. I was used to the doctors and nurses taking care of my baby because they knew exactly what to do if something went wrong with him. My experience with my son’s care team at Children’s New Orleans was amazing. I am grateful to Dr. Pigula for performing Hayes’ heart surgery and I was blessed to have compassionate nurses who took care of my son and helped calm down my nerves. They, along with my boyfriend and parents, gave me the support I needed to get through this tough ordeal.”

Today, Hayes is one and a half years old, and Nikki says her son is doing extremely well. He loves to eat, play and is a happy child. As for his follow-up cardiology care, Hayes sees Dr. Thomas Kimball, his pediatric cardiologist, regularly to check on his heart and valve repair. Looking back on this, Nikki says she hopes Hayes’ story will inspire other patient families to stay positive and keep moving forward.

“I never expected to be on this journey,” said Nikki. “Some days were harder than others, but I realize how important it is to take it one day at a time and trust your care team. They know what they are doing and because of the care that Hayes got, I know they are part of the reason why my son is here today.”

For more information about the Heart Program at Children’s Hospital New Orleans, visit this website Children's Heart Center - New Orleans | Pediatric Cardiology (chnola.org).