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Counting our blessings: Presley’s courageous journey after Tetralogy of Fallot surgery

Counting our blessings: Presley’s courageous journey after Tetralogy of Fallot surgery

Megan Mitchell and her husband, Adrian, had been trying for a while to have a baby, but deep down, Megan knew pregnancy might not be in the cards for her – at least that’s what her doctors told her.

“I have polycystic ovary syndrome which makes it harder to get pregnant,” said Megan. “I remember sitting on the couch scrolling through TikTok one day, and every video I saw made me cry. I was super emotional and I decided to take a pregnancy test. When I saw the two pink lines appear, I was totally shocked. I called my husband and he couldn’t believe it! We were thrilled to become parents.”

Megan began seeing her OB-GYN in Alexandria, Louisiana, to ensure she and her baby were doing fine. “My pregnancy was rough from start to finish,” recalled Megan. “I had constant morning sickness. I was nauseated and tired all the time, and had no appetite. I also developed diabetes during my pregnancy.”

Gestational diabetes can develop during pregnancy in women who do not already have diabetes. This condition occurs when the body cannot make enough insulin because the hormones produced during pregnancy can make insulin less effective or insulin resistant. Gestational diabetes usually disappears soon after delivery. Approximately 3 to 8 percent of pregnant women in the U.S. are diagnosed with it.

Despite the symptoms that accompanied her pregnancy, the couple’s baby – a boy – was doing well. His weekly ultrasounds showed he was growing and developing like he should. “He would always hide his face. Every time the tech put the doppler on my belly, he would kick it. He never wanted to be seen.”

Then, when Megan was 31 weeks along, her water broke.

Megan was admitted to an Alexandria hospital. On February 16, 2022, Megan and Adrian welcomed Presley into the world. He was born at 32 weeks via C-section and he weighed 4 pounds, 17 ounces.

“It was the most wonderful feeling in the world to hear him cry for the first time,” said Megan. “I was overwhelmed with emotions. Presley was finally here. In that moment, our lives changed forever.”

An unexpected diagnosis

After Presley’s birth, he was monitored in the neonatal intensive care unit (NICU). He was a little pale and had trouble breathing. Everything else was normal on the outside.

Then, six hours after Presley was born – that’s when everything changed.

“The cardiologist came into my room and told us Presley had a serious heart problem and he needed to be airlifted right away to Children’s Hospital New Orleans to receive a higher level of care,” said Megan.

An echocardiogram on his heart confirmed Presley had Tetralogy of Fallot (TOF or TET). TOF is a rare condition caused by a combination of four congenital heart defects that can lead to insufficient blood flow to the lungs. These defects include narrowing of the pulmonary artery, ventricular septal defect (opening in the wall between the right and left ventricles), an overriding aorta, and enlargement of the right ventricle. TOF can cause serious complications including blood clots, heart failure and even death.

“I was scared and nervous,” said Megan. “I was going through all kinds of emotions. My 6-hour-old baby was struggling to survive. I was confused because up until his birth, our son was the picture of health.”

A higher level of care

On February 16, 2022, Presley was airlifted to Children’s Hospital New Orleans. He was transferred to the Level 4 NICU, which provides the highest level of care to both premature and critically ill babies.

“After I was discharged from the hospital in Alexandria, we made the four-hour drive to New Orleans,” said Megan. “Before we got there, the doctors and nurses always called and updated us daily on our son’s condition. They were spot on with everything when we were not there. If they had any questions or concerns, they would let us know. They made us feel comfortable as comfortable as we could be.”

Presley was considered a Pink TET baby, and his cardiology team didn’t want to perform surgery on him soon after he was born because his TOF wasn’t as severe and he wasn’t showing signs of turning blue. “He wasn’t having TET spells (sudden episodes of bluish skin during crying or feeding) but you could tell his breathing was a little off, but it was not bad to where he needed surgery right away,” said Megan.

Besides monitoring his TOF, the NICU team helped Presley with his breathing. He was on a nasal cannula, a device that provides oxygen therapy through the nose, for about four weeks until his discharge. He also needed help with his calories. He was not getting his suck, swallow and breathe function completely down, and he wouldn’t take a bottle. He had a G-tube to help with feedings.

After spending nearly three months in the NICU, Presley improved and gradually caught up to all his developmental milestones. He was ready to go home for the first time on May 5, 2022.

A month later, Presley had trouble breathing. His fingers and toes were blue.

On June 14, 2022, Presley was flown back to Children’s Hospital and transferred to the cardiac intensive care unit (CICU)in the Heart Center which specializes in rare to complex pediatric heart conditions, with a full spectrum of pediatric specialists and sub-specialists. Megan and Adrian arrived a few hours later.

Dr. James Krulisky, our cardiologist in Alexandria who is affiliated with Children’s Hospital, pushed to have Presley’s heart surgery done sooner,” said Megan. “He did not want to take the chance of waiting anymore. Our son was supposed to have heart surgery at 6 months old, but he needed it right away.”

Presley’s first heart surgery

The day before Presley’s surgery, Megan and Adrian met with Dr. Timothy Pettitt, their son’s heart surgeon who is also the surgical director of the Congenital Heart Service Line at Children’s Hospital.

“Dr. Pettit described what was wrong with Presley’s heart and explained the surgery and how he would fix his heart,” said Megan. “He reassured us he’d been doing this for a long time. The manner in which he explained everything made us feel more comfortable and more confident about the situation.”

On June 21, Dr. Pettitt performed the TOF repair on 4-month-old Presley.

“TOF is a heart condition that has four defects, and two of them require surgical correction,” said Dr. Pettitt. “One of the parts that needed to be fixed was an obstruction in Presley’s right ventricle. This obstruction occurred in three places: below the pulmonary valve, at the valve and above the valve. The left pulmonary artery was also in an abnormal position, which made fixing it harder. We ultimately disconnected it and reimplanted it in a more posterior orientation. Presley had a tough time after the surgery because his right ventricle was very thick and not working well. Most babies who have this surgery usually recover after a few days, but Presley’s right ventricle needed more time to heal.”

Road to recovery

While in the CICU, Presley was put on extracorporeal membrane oxygenation (ECMO), which is a heart-lung bypass machine that takes over the function of the lungs and heart. After 10 days on ECMO, Presley was intubated for a few weeks. He was intubated three times during his 2-month stay in the CICU.

Presley never gave up. He pushed through like a strong heart warrior.

“The first month was scary but things improved,” said Megan. “By mid-July, Presley was off his sedation medications. He was waking up, moving and he was alert. His heart and lungs were improving. Presley’s respiratory therapist was amazing. She worked with him every day to get his lungs cleared. She was a saint and an angel wrapped all in one. Everyone who was involved in our son’s care was amazing.”

Today, 1-year old Presley is a happy boy with a loving and sassy personality. He can sit up, crawl and roll over. He has regular follow-up appointments with his pediatric cardiologist to check on his heart and to address any potential complications that may require additional surgical interventions down the road.

"It’s been a wild year, but our family is truly blessed,” said Megan. “Our son, Presley, would not be here if it weren’t for the great care he received. His doctors and nurses in the CICU were top tier. The team always updated us and included us in rounds. They were always there supporting us during our scariest moments. I will never forget the ECMO specialist who made me feel comfortable and safe leaving my baby in the hospital for the first night. He told me, “Don’t worry. I will be with your baby all night long.” That meant a lot to us. They took care of our son as if he was their own child. They were amazing!”

The Heart Center at Children's Hospital New Orleans provides comprehensive evaluation and treatment of patients with congenital cardiovascular disorders. We are the only facility in the state offering a full array of services to care for your child from heart to toe. Click here to learn more.