A New Lease on Life
Salem Novak cares for adult cardiac patients as a nurse in Longview. She never dreamed of being on the receiving end but says that her new role as a “heart mom” has changed her life and taught her more than she could imagine.
At Salem’s anatomy scan, not only did she find out they were having a boy but she discovered that he had a heart defect. Soon after, he was diagnosed with Hypoplastic Left Heart Syndrome, which causes the left side of the heart to be severely underdeveloped. She says it felt like her world stopped and everyone else’s kept moving forward.
“Our pediatric cardiologist in Longview explained the anatomy and our treatment options,” says Salem. “She gave us time to process it all and said we needed to be ready to fight when we came back. We have not stopped fighting since.”
Their pediatric cardiologist prefers Children’s Health over any other hospital in the area and wanted Stark to be treated there. After a meeting with Dr. Joseph Forbess, division director of Cardiothoracic Surgery and co-director of The Heart Center at Children’s Health, and a tour of the Cardiac Intensive Care Unit, Salem and her husband, Chris, knew it was the only place for Stark.
Confident in the Heart Center Team
When Stark was born, Salem said she felt an overwhelming sense of love and any doubts they had about their baby living quickly vanished.
“Hearing my baby cry for the very first time was the most indescribable feeling I have ever had,” says Salem.
She was able to touch him through the holes in the incubator before he headed to Children’s Health with her husband.
Stark underwent his first surgery, The Norwood, at 5 days old. She says the hardest part was walking him to the operating room doors where she had to say goodbye. But knowing Dr. Forbess and the team behind those doors gave her confidence.
“The Heart Center team is incredible,” says Salem. “They went above and beyond to care for him and for me.”
When Stark was 4 months old, Dr. Vivian Dimas, pediatric interventional cardiologist and heart failure/transplant attending physician at Children’s Health, performed a cardiac catheterization, and it was determined from that point on that he would need to have his next surgery early. Stark underwent a bidirectional Glenn shunt procedure with Dr. Forbess, allowing most of the upper-body blood to flow directly into the lungs.
Journey to a New Heart
The next year progressed normally as Stark met milestones and took medications for his heart daily. Stark’s heart defect caused his oxygen saturations to be on the low end and left him looking blue at times, especially when he was cold. The plan was to wait until 3 or 4 years old for the next procedure, but his tricuspid valve was causing his heart to overwork itself. His failing valve was replaced with a mechanical one, and a follow-up echocardiogram revealed it was a success.
Five months later, Salem noticed Stark’s face looked puffy along with congestion. At Children’s Health in Dallas, Salem heard the two words she was not expecting – heart failure.
“While we knew that transplant was in the future, we thought it was a distant future,” says Salem. “Now it was right in front of our faces and we didn’t know how to react.”
The next week involved meetings and interviews with the transplant team. Salem says she asked the chaplain how to pray, and she said: “We know that things happen every day. We don’t pray for them to happen, but we pray that in the event something does, they make the choice to donate. Pray for the choice.”
“Even as a nurse, I still had questions and Dr. Dimas was amazing at explaining everything so that my husband and others could understand,” says Salem.
On November 23, 2014, 2-year-old Stark’s donor heart became available. Dr. Forbess performed the transplant, giving Stark a new lease on life. He was discharged 20 days later.
“It was amazing how fast he healed,” says Salem. “He went from blue and pale to pink and warm.”
A Bright Future
Stark’s future treatment includes lifelong immunosuppression medications. He remains at higher risk for infection due to these medications and will be monitored much more closely with any illnesses. He will also be monitored routinely for any signs of rejection of his heart including ultrasounds and annual catheterizations.
“His prognosis is excellent assuming no cases of severe rejection or other complications related to transplant which are around 10 to 15 percent,” says Dr. Dimas.
Today the toddler has endless energy, bouncing around on toys, climbing all over the place and splashing in the pool. His favorite book for Salem to read to him is “I Love You Forever.”
“Ever since his transplant, I don’t know how to stop him.”