From Diagnosis to Discharge and Beyond: A Patient Perspective of Team-Based Care
The ACC has long been a proponent of coordinated care executed by an effectively structured and managed team of professionals from across the health care spectrum. The recent release of a health policy statement on the importance of team-based care is just one of the latest approaches for the College to ensure each member of the care team is engaged and utilized to improve outcomes for cardiovascular patients.
For one ACC staff member, team-based care and care coordination are to thank for saving her son’s life. Just 20 weeks into her pregnancy, Autumn Niggles, and her husband, Andy, received the unexpected news that their unborn son, Lachlan, had a serious congenital heart defect (CHD).
Lachlan’s CHD was first diagnosed via ultrasound during a routine anatomy scan – a catch the Niggles credit to a well-trained technician, attuned to these types of anomalies. Autumn was then referred to Children’s National Medical Center, where she had a fetal echocardiogram, which was analyzed by fetal and pediatric cardiologist, Mary Donofrio, MD, FACC, who made the official diagnosis. Lachlan would be born with a cyanotic critical CHD known as dextro-transposition of the great arteries (d-TGA), requiring an arterial switch procedure within days of his birth.
Following the confirmation of Lachlan’s d-TGA, Donofrio gathered a team of people – including a hospital social worker and a nurse coordinator – to give the Niggles family the news. The team caring for Autumn and Lachlan quickly grew as the due date approached. Richard Jonas, MD, joined the team as the pediatric cardiovascular surgeon who would perform Lachlan’s surgery, and Autumn continued to have monthly fetal echocardiograms and was monitored closely by a perinatologist to screen the baby for growth and function status. “From day one, there was an entire team there to guide us through the process,” said Autumn. “The team collaborated across departments, institutions and practices all in the name of quality patient care.”
On the day of Lachlan’s scheduled delivery, Donofrio was on hand with the rest of her team, including a transportation team, nurses, a nurse coordinator and others who were at-the-ready to act within minutes.
“When I was moments away from cesarean section and nervous about Lachlan’s prognosis, Donofrio came into the room and knelt down beside me. I remember very clearly she said that everything would be taken care of and that our son had the best team awaiting him in the adjacent room,” said Autumn. “Minutes later, we heard Lachlan’s big, bold cry – and despite being born incredibly blue at 40 percent oxygen saturation, we were so grateful for that sound, and for the professionals that were on hand to get him the care he desperately needed.”
Moments after Lachlan was born, he was moved to the adjacent room for a quick echocardiogram to confirm their prenatal diagnosis. After preliminary testing and administering medications to try to improve his oxygen levels, the transportation team moved him via ambulance from the delivery hospital to Children’s National Medical Center, a five minute ride away. Awaiting him in the cardiac intensive care unit (CICU) were a team of specialists inculding a cardiac internsivist and interventional cardiologist.
Once at the CICU, the team, led by Donofrio and Joshua Kanter, MD, FACC, performed a balloon septostomy within 45 minutes of birth to widen the foramen ovale and allow natural oxygenation of Lachlan’s bloodstream. He stabilized in the CICU, after which Jonas performed the full arterial switch procedure, leaving Lachlan’s chest incision open to relieve pressure. Three days later, a separate surgeon closed the incision. Over the course of two weeks and through a series of care transitions from operating room to CICU to the less critical “step down unit,” a team of nurses, nurse practitioners, respiratory therapists, physicians, technicians, pharmacists and others took incredible care of the Niggles’ baby boy as he improved every day.
“Each morning and evening during our time in the CICU, members of the care team would walk the floor for rounds – discussing each case as they approached the patient’s room,” said Autumn. “It was incredibly apparent that they were well-coordinated and well-trained. We felt cared for and listened to each time they came to Lachlan’s room as a group to talk about the next steps in his care.”
Autumn poignantly remembers a moment during Lachlan’s first week when a hospital volunteer came to play the guitar and sing for the new baby. “We put a little party hat on Lachlan’s head and watched him respond to his one-person concert, celebrating the milestone of one week of life following a very scary entrance into the world and interventions shortly thereafter.” She adds that her family “likes to consider these volunteers as part of an overarching care team, as they can make a huge difference to a patient and family in crisis.” At the end of a very long and intense two weeks, Lachlan was discharged from the hospital.
While the team caring for Lachlan has grown much smaller since discharge, he continues to be seen by various care team members, and will see a cardiologist for the rest of his life. At his last check-in with Donofrio at eight months old, Lachlan was given the clearance to be seen annually for echocardiograms, electrocardiograms and general pediatric cardiology check-ins.
In addition, Lachlan sees a developmental specialist at key milestones to ensure that his brain and physical development are on target for his age, as there can be a link between neuro-developmental outcomes, cognitive growth and CHD. Autumn is happy to report that Lachlan is doing incredibly well. Looking back on this experience, Autumn has a deepened appreciation for the members of the ACC. “I have worked with ACC members every day now for seven years and, while I have always had a great respect for all that they do, I am in complete awe of their day-to-day jobs now,” she said.
“The most perspective-altering piece of this is that now I see how, when these teams work well, they can make a positive and life-altering difference. The entire cardiovascular care team worked like an incredibly well-oiled machine and they executed their plan of action with a precision and expertise that we couldn't have imagined.”
Learn more about the Adult Congenital and Pediatric Cardiology (ACPC) Section at ACC.org/ACPC. Visit the Congenital Heart Disease and Pediatric Cardiology Clinical Topic Collection on ACC.org for the latest clinical news, patient case quizzes and more.
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