UNC Children’s Heart Program Fights for Infant’s Life …
Culminating in Successful Heart Transplant
Diagnosed with a congenital heart condition while still in utero, Suzi Leahy’s unborn son, Jett, was given “little chance of survival,” yet he beat the odds thanks to the life-saving care of the N.C. Children’s Heart Center at UNC Children’s Hospital in Chapel Hill, NC.
Jett celebrated his first birthday in September 2019, but it was a very tough road from diagnosis to birthday celebration.
Jett’s Journey at UNC Children’s
“Little chance of survival.” Those were the devastating words delivered to Suzi Leahy as she sat alone in her doctor’s office soon after they performed a fetal echocardiogram at her 24-week appointment. Suzi’s husband Anthony had left two weeks prior for Iraq, a nine-month deployment with his Army unit.
She was informed that her unborn son, Jett, was diagnosed with an unbalanced atrioventricular septal defect (AVSD), a congenital heart condition in which there are holes in the wall separating the right atrium and the left atrium of the heart. Rather than having a mitral valve on the left side that separates the upper and lower chambers and a tricuspid valve that separates the upper and lower chambers on the right side, Jett had a common AV valve, atrioventricular valve. Not only that, but the AV valve was shifted over, so blood was not getting into one of the pumping chambers, causing it to be underdeveloped.
According to the March of Dimes, a congenital heart defect (CHD) is a problem with the structure of the heart. It is present at birth, and the most common type of birth defect. Nearly one in 100 babies (about 1% or 40,000 babies) are born with a defect in the United States each year. About one in four of those babies born with a heart defect (about 25%) has a critical CHD.
“My husband and I have three children, two girls, and a boy, with zero medical issues,” says Suzi Leahy. “When the doctor told me this news, I couldn’t believe it. We Red Cross-messaged my husband, and he came back immediately to support our family. I was scared, but even though doctors were telling me the survival rate wasn’t high, I stayed positive. I continued my everyday activities and got the nursery all set up and ready to bring my baby boy home.”
The family was referred to UNC Health Care by Dr. Christopher Jordan, Pediatric Cardiologist at Womack Heart Center in Fort Bragg, NC. The rest of the pregnancy was a whirlwind of appointments for the Leahy family that included UNC Maternal Fetal Medicine, UNC Cardiology, and UNC Congenital Heart Surgery Teams. In the 37th week, Suzi and Anthony met with Dr. Mahesh Sharma, Chief of Congenital Cardiac Surgery and Co-Director of the NC Children’s Heart Center. At the appointment, Dr. Sharma talked with the family about what they planned to do to fix the heart.
At the time of their consult, it was unclear on Jett’s prenatal ultrasound whether he would have two adequate ventricles or pumping chambers. The options Dr. Sharma laid out were repair his AV canal defect or proceed with a single ventricle strategy if one ventricle was too small. This approach would require a multi-step process, all of which depended on how Jett’s body reacted to the procedures.
Jett is Born & the Fight Begins
At 39 weeks (September 2018), Suzi’s labor was induced, and Jett was delivered via natural birth at UNC Women’s Hospital. After delivery, Jett was brought to the Neonatal Intensive Care Unit. New fetal echocardiograms were performed, and four days after delivery, Jett was sent home to be with his family. Initially, Jett was doing well, hitting milestones of eating and weight gain. However, a week after birth he stopped nursing, and Suzi could tell he was having a hard time breathing. Doctors started him on Lasix heart medication, which prevents the body from absorbing salt and is given to patients with heart failure to treat fluid retention.
Thanksgiving night, Suzi noticed Jett was having a difficult time. The whole day he was throwing up after every feed, and as evening neared, he was breathing hard, sweating and struggling overall. He was admitted through the ER and thus began the long fight to save Jett’s life. He was admitted with severe heart failure and multiple viruses infecting his lungs.
Without the wall separating the chambers of the heart, blood was flowing into Jett’s lungs, making it hard for him to breathe. He was placed on a ventilator upon admission. The risk of open heart surgery at this point was too high since he had multiple infections and his heart function was deteriorating. In late December, Dr. Sharma and his team treated Jett with a pulmonary artery band to ease the severity of the disease and to limit blood was going to his lung so the pneumonia could improve. The band is designed to restrict the amount of blood going to the lungs.
The operation to place the band was met with some unforeseen challenges. As the two-hour procedure stretched to three, and then four hours, Suzi’s agitation continued to grow. Dr. Sharma called on his Co-Director of the NC Children’s Heart Center at UNC Children’s Hospital and Chief of the Division of Pediatric Cardiology, Dr. Tim Hoffman, to meet with Suzi and the family. They sat down for the first time in a conference room so that Dr. Hoffman could deliver some unexpected news.
During surgery, Jett’s heart did not tolerate the PA banding. For reasons that are not completely clear, the stress the band placed on the heart caused it to develop an arrhythmia that stopped his heart. He was saved by being placed on extracorporeal membrane oxygenation (ECMO), a treatment that uses a pump to circulate blood through an artificial lung back into the bloodstream. This system provided heart-lung bypass support outside of Jett’s body.
“It was a challenging way to meet someone,” shares Dr. Hoffman. “The reality is there is no way to put anyone at ease in a situation like that. Instead, my goal was to be truthful and transparent with the family. I sat there with them and concentrated on what their needs were. At that point, you have to have empathy, humility and be a person for them and not necessarily the physician.”
Heart Transplant Seen as Best Option
Jett’s heart did recover after the surgery but his heart failure persisted, making his heart too weak to successfully undergo corrective surgery. Therefore, the team decided to pursue heart transplantation and Jett was placed on the transplant waitlist.
“I knew a transplant was in our future, but I didn’t expect it to be so soon,” Suzi shares with a heavy heart. Jett was only three months old. “I struggled a lot with this because I knew that if my son was to get a heart, it meant the ending of another life. We waited for five weeks. The closer we got to the transplant, the worse his condition became.”
A Bad Night for Jett
She recalls a particular lousy night for Jett, “They called me at midnight March 15 and told me I needed to come in immediately, something wasn’t right. When I rushed to his room, his doors were wide open; there were so many people there, a code cart available. I walked up to him, eyes rolled back in his head, white as a sheet, and whispered to him, ‘You’re going to be ok. You’re a fighter. Don’t give up.’ I stepped away and went to the edge of the bed so the doctors could stand next to him. We were all watching the monitor. His heart rate would fluctuate from the low 70s up to 120s. It felt like it was playing a game on us. When his heart rate dropped to the 30s, they started chest compressions in front of me. I was scared to death, crying, praying out loud to God, asking him not to take my baby boy. The doctors and nurse were able to get him stabilized, but I knew he didn’t have long; he needed a heart.”
A Donor Heart is Identified, But …
On March 22, seven days after Jett’s second cardiac arrest, Dr. Sharma called Suzi. “I wanted to let her know we were looking into an offer, but it was complicated,” explains Dr. Sharma. “It wasn’t as straightforward as we had hoped. Jett was O+ blood type, but the blood type of the donor was A+ so they were an ABO-incompatible match, which I told her could come with some complications. But because Jett was less than a year old his immune system hadn’t fully developed. That could work in our favor in helping suppress his immune system enough so that it would accept the donor heart. I asked if she wanted to move forward, and she was emphatic that this was the path they wanted to take.”
According to the registry of the International Society for Heart and Lung Transplantation, approximately 500-600 pediatric heart transplantation procedures are performed worldwide each year. In the Journal of Heart and Lung Transplantation, a recent study entitled “Pushing the boundaries: The current status of ABO-incompatible cardiac transplantation” states that one of the most significant factors limiting the number of heart transplants in infants is the shortage of suitable donor organs. Infants often present in poor clinical condition, and waiting list mortality is higher than in adults, with instances of between 23% and 50% reported in some studies.
Transplant Surgery is a Go
Doctors performed tests to see if Jett’s blood would reject the donor heart and found that his blood had little to no reaction. The surgery was a go. Although the entire process was lengthy, the heart was implanted in less than one hour. It was the first ABO-incompatible heart transplant in UNC’s history. Performing heart transplants requires an expert team of doctors across multiple disciplines, but performing an ABO-incompatible transplant requires another level of care due to the complexities of the case.
“I paced outside the Pediatric Intensive Care Unit doors, waiting to see my baby boy,” recounts Suzi. “Dr. Sharma greeted me first. He looked exhausted but extremely relieved. He came up to me, and I remember how he looked, his facial expressions, and my son’s blood still on his scrubs. He opened his arms and hugged me tight and said, ‘We did it. Your son is doing amazing!’ I was so relieved. I waited by those doors and saw the team turn the corner with Jett, and they were all smiling. I looked down at him in his little gurney. When he went back for surgery, his skin was a blueish/purple color that was normal for him and now I could see a healthy pink glow. I kissed his little hand and fell to my knees and cried, thanking God for saving him.”
Jett’s Road to Recovery
The next step for Jett’s care was all about recovery. Throughout the healing process, Jett faced some challenges, but his doctors and mom were there to closely monitor him. Two weeks after his transplant, Jett was diagnosed with a critical brain bleed in the cavity surrounding his brain. This required the assistance of pediatric neurosurgeon, Dr. Carolyn Quinsey, who successfully placed a drain to help divert fluid from around Jett’s brain and monitor pressure inside his skull. Doctors made daily rounds to Jett’s room to check on the family and ask how everyone was doing. They shared in their triumphs with each milestone achieved and worked hard at each new setback Jett faced. Jett’s hometown cardiologist, Dr. Jordan, would make frequent stops on his way through North Carolina to stop in and see how the family was doing. He remained in contact with the doctors at UNC and was kept abreast of Jett’s progress. Slowly and surely, Jett made a miraculous recovery.
Complete Team Approach Creates Success
“Jett and his family became part of our family,” explains Dr. Hoffman. “Transplant is never successful unless it is a complete team approach between the providers and family. When there are strong bonds between providers and family, this leads to the best outcomes possible. Throughout Jett’s medical journey his family advocated and cared for him as we cared for him simultaneously. Because families are so dedicated to their children, it is the most humbling but yet the highest form of flattery to take care of their child and become part of their family.”
UNC Children’s Hospital also included additional support in the form of Child Life. Child Life is a team of specialists that builds relationships with patients and families to help them through life-altering events by providing support based on individual needs. For the Leahy family that came in multiple forms. Child Life’s Whitney Adams, CCLS, made numerous trips to Jett’s room to do handprints, footprints, and foot moldings. Her team also coordinated a photographer to come in to take photos of the entire family.
During Jett’s time in the hospital, the entire family stayed at the Chapel Hill Ronald McDonald House. Their mission is to “care for families in life-altering moments, days and months that children spend in area hospitals. The House offers physical comfort and emotional support through programs dedicated to the well-being of the whole family.” While mom would make daily trips to the hospital to see Jett, his siblings attended nearby Glenwood Elementary to provide them some form of normalcy. The Ronald McDonald House hosted monthly events and activities just for the siblings of patients, which allowed them a sense of importance during such a turbulent time in the family’s lives.
Going Home After 264 Days & First Birthday
After 264 days in the hospital, Jett was discharged. He was sent home to be with his family and continue his recovery in their loving embrace. Jett turned one in September 2019 and has been doing incredible since his discharge. While he still faces some medical challenges as a result of his critical illnesses, he is smiling and laughing all day. He is regularly eating, has started on baby foods, and is meeting his growth milestones. Not only did Jett survive, but he is learning to thrive.
Incredible Team at UNC Children’s
“The entire team at UNC is incredible,” gushes Suzi. “Everyone from the PICU nurses who are like family to us, to the cardiology team, to all the people who supported us in a million ways during our stay at the Children’s hospital. I wholly recommend UNC Children’s hospital, because it’s truly a remarkable place.”
For more information about the UNC Children’s Congenital Heart Surgery program, contact Dr. Mahesh Sharma, Chief of Congenital Cardiac Surgery and Co-Director of the NC Children’s Heart Center, details at: https://www.med.unc.edu/surgery/ct/directory/mahesh-s-sharma-md-2/.
UNC Children’s Heart Care: https://www.uncchildrens.org/uncmc/unc-childrens/care-treatment/heart/
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