Krisi and Mike’s daughter Stella, a twin to brother Max, would need open-heart surgery in her first few days of life.
Their search for the best treatment possible stopped at the Children’s Heart Center at Ann & Robert H. Lurie Children’s Hospital of Chicago. The Heart Center, ranked 8th in the nation for child cardiology and heart surgery by U.S. News & World Report, brings the spectrum of cardiac specialists together to care for patients with the most complex and serious heart conditions throughout their lifespans — from before birth, through childhood and into adulthood.
“After meeting with the whole team and discussing the care, quality of life, and the treatment she would need, we felt as though our daughter had the best chance at life when treated at Lurie Children’s,” Krisi said.
At Lurie Children’s Regenstein Cardiac Care Unit (CCU), inpatients with the most complex heart conditions stay in the same private room from admission to discharge. The care unit is where Krisi and Mike called home for months following Stella and Max’s birth at 38 weeks. Stella was diagnosed with hypoplastic left heart syndrome (HLHS), meaning the left side of her heart was severely underdeveloped. At just five days old, she had her first open-heart surgery with Joseph Forbess, MD, Division Head of Cardiovascular-Thoracic Surgery at Lurie Children’s and the Surgical Director of the Single Ventricle Center of Excellence.
In Stella’s operation, known as The Norwood procedure, Dr. Forbess built a new aorta, and made the right ventricle pump blood into both the new aorta and to the lungs. The tube carrying blood to the lungs is an innovative device that can be balloon-dilated in the catheterization laboratory, allowing it to carry more blood as the patient grows. Dr. Forbess and Alan Nugent, MD, the Director of the Interventional Cardiology and Cardiac Catheterization Laboratory at Lurie Children’s, have participated in the development of this novel tube graft and have published some of the early encouraging results with it.
Stella weighed a little more than five pounds at her Norwood operation, so the dilatable tube allowed her to have the right amount of blood flow to her lungs for her initial small body size, while balloon expansions some months later allowed her to receive an appropriately increased amount of lung blood flow as she got bigger.
After surgery, Stella recovered in the hospital for months, a period that served as a crash course for the parents in learning to care for their daughter’s medical needs.
As a way to help manage Stella’s care at home, the family participated in the Heart Center’s Interstage Home Monitoring Program (IHM). This program allowed Stella to be at home with her family while staying in constant contact with her team from Lurie Children’s Single Ventricle Center of Excellence. IHM focuses on home monitoring of oxygen saturation levels, caloric intake and weight gain in addition to early recognition of “Red Flag” symptoms.
The unique program at Lurie Children’s has taken this monitoring one step further in collaboration with the Telehealth Programs to include weekly scheduled video visits with the patient and family in their home, along with daily remote patient monitoring, making an advanced practice nurse and nurse coordinator available to the family day and night.
As babies such as Stella who have undergone heart surgery grow and become adolescents, they may need additional support. For patients whose surgeries early on in life lead to developmental or psycho-social impairment, Lurie Children’s NICU-Cardiac Neurodevelopmental Program provides support for children with issues involving school achievement, language, visual processing, memory, attention, executive functioning and motor skills.
Adolescents also benefit from the Adult Congenital Heart Disease Program (ACHD), which is designed to ease the transition from pediatric to adult cardiac care. This care coordination from pediatric cardiologist to ACHD cardiologist provides a seamless continuity and reduces risks of problems from multiple hand-offs to different physicians.
In February, Stella underwent her second heart operation, The Glenn procedure, with Dr. Forbess. This made it possible for blood from the upper body to go to the lungs. The baby faced many complications following this surgery, including chylothorax, norovirus and a need for chest tubes. She had to endure a catherization and a lymphangiogram and stayed in the hospital for more than two months.
“Despite the road bumps, the CCU team led by Dr. Kiona Allen persisted to find good outcomes,” Krisi said. “Stella smiled through most of the days, even when COVID-19 made it difficult to visit with new arising policies. All through this, we made it as a family and Stella finally went home without readmission.”
Since then, Stella has made strides very quickly, catching up to Max every day, stunning her family with her will to learn and persevere, Krisi said. S
he has even graduated from Home Monitoring Program. She no longer needs a nasogastric feeding tube, and can eat 100 percent by mouth, a celebrated milestone among children with her condition.
“Max shows her all she needs to know. When they play, they giggle and give each other hugs and kisses, and they are finally on the same schedule,” Krisi said. In July, the siblings celebrate their first birthday.
Stella’s next, and hopefully final, surgery – the Fontan procedure will – occur when she is between 3-4 years old.
“We thank the stars above for Lurie Children’s Heart Center surgeons, doctors, nurses and staff who care for Stella and who are a part of our family,” Krisi said, noting especially Dr. Forbess, Dr. Nugent, Michelle Steltzer, CPNP-AC/PC; Amanda Synder, Nurse Coordinator; Kiona Allen, MD, Interim Medical Director, Regenstein Cardiac Care Unit; Medical Director, Single Ventricle Center of Excellence; Associate Medical Director, NICU-Cardiac Neurodevelopmental Program; Amy Lay, MD, Director of Non-Critical Care Inpatient Cardiology in the Regenstein Cardiac Care Unit; Jared Green, MD, Division Head of Interventional Radiology; and the entire staff of the Regenstein Cardiac Care Unit.