It takes a team to heal tiny hearts

First-time parents Tom and Brittany Baisch had barely held their two-hour-old baby, Lincoln, when a nurse at Northwestern Lake Forest Hospital noticed that Lincoln’s oxygen level was low. She consulted with a staff pediatrician, who thought she detected a heart murmur and ordered an echocardiogram, a diagnostic scan that reveals the heart’s structure. 

Although the echocardiogram was performed in Lake Forest, Thomas Weigel, MD, a cardiologist at Ann & Robert H. Lurie Children’s Hospital’s Heart Center more than 30 miles away, monitored the procedure in real-time. Lurie Children’s tele-echocardiography services enable cardiologists to interpret images of the heart originating at other medical facilities to diagnose congenital heart defects.

Lincoln’s echocardiogram indicated he had either a narrowing or blockage of the aorta. Dr. Weigel arranged for Lincoln’s immediate transport to Lurie Children’s. “It was all happening so quickly,” says Tom. “We didn’t know what to think.”

Tom rode with Lincoln in the ambulance, and upon their arrival at Lurie Children’s Regenstein Cardiac Care Unit (CCU), he was amazed to find more than a dozen doctors and nurses waiting for his son. “It was quite a welcoming committee,” he says.

Lurie Children’s cares for more children with life-threatening heart conditions than any other hospital in Illinois, and its CCU is one of the few cardiac units of its kind in the nation. Patients stay in the same room from admission to discharge, and benefit from having the same multidisciplinary healthcare team throughout their hospital stay.  

Lincoln underwent further tests, which revealed a severe narrowing in the main artery supplying blood to his body, a condition called coarctation of the aorta. He was given medication to improve the function of his heart, and eight days after he came to Lurie Children’s, Lincoln underwent surgery. During the procedure, cardiovascular-thoracic surgeons Carl Backer, MD, and Osama M. Eltayeb, MD,  surgically corrected the defect which, if left untreated,  can lead to heart failure.  

During Lincoln’s 11-day recuperation from surgery, Tom and Brittany only left his room to sleep at the nearby Ronald McDonald House. They knew Lincoln was making progress, because each day he had fewer tubes connected to him. After spending his first three weeks of life at Lurie Children’s, Lincoln finally went home.

Tom reports that Lincoln, who is nearly three months old, is thriving, and has normal heart function. He undergoes physical and occupational therapy and has monthly follow-ups with Dr. Weigel and Guy Randolph, MD, at Lurie Children’s outpatient center at Northwest Community Hospital.

“Lincoln is pretty much a normal baby,” says Tom. “He may have some restrictions about playing contact sports when he’s older, but otherwise he should lead a normal life. We’re so grateful for the incredible care he has received at Lurie Children’s.” 

Physicians, surgeons and nurses at Lurie Children’s Heart Center are involved in a broad spectrum of research projects. Lincoln’s parents are participants in a clinical study to determine if families of babies who have undergone heart surgery benefit from increased caregiver support after their child goes home.

Twice a week nurse practitioner Carrie Alden has “virtual” home visits with Tom and Lincoln via FaceTime video calls. Carrie checks on Lincoln’s progress, performs a brief visual examination and answers questions about his care. She also asks Tom a series of questions aimed at identifying and addressing any issues relating to parental stress, quality of life and social isolation. Tom also receives daily text messages prompting him to send data about Lincoln’s weight, food intake and pulse and oxygen levels.

“These calls can be very helpful,” says Tom. “Also, research is essential, because it addresses the larger issues. And, it’s the research that took place five years ago that is helping kids like Lincoln today.”