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Finding the Beat
Alethea Bloedel
Children's heart surgery program hits its stride, providing pediatric clinical expertise and technological innovation that are unparalleled in the Pacific Northwest.
Alethea Bloedel's primary care physician knew something was wrong, but couldn't figure out just what. The baby's skin was still dusky at six weeks and it was not a good sign. Suspecting a heart problem, she had the newborn examined by several doctors during that critical time.
"Alethea was gaining weight and, with the exception of her coloration, appeared perfectly healthy after repeated checkups," recalls her father, Matthew Bloedel. "But her color never improved, so the doctor scheduled some tests."
Even knowing that something could be amiss, the Bloedels were not prepared for the diagnosis: The two main arteries leaving Alethea's heart were crossed and pumping blood in the wrong direction.
Left untreated, most children with the condition, known as transposition of the great arteries (TGA), die before their first birthday.
Though correctable through surgery, experts say it's best to act within a baby's first three weeks before the heart begins to weaken from lack of appropriate use.
Unfortunately, Alethea was twice the ideal age by the time the diagnosis was made.
Resources and technology
The news wasn't entirely bad: Alethea was referred from Swedish Medical Center to Children's Hospital, the only hospital in the area with an experienced team to undertake such difficult cases.
This statement isn't just an issue of pride — it's also one of resources. The recently revamped program has the staff, expertise and equipment to handle the most technically difficult cases, as well as the teamwork and communication to make it all work.
Children's is able to treat all patients — from the less critical to the most complex.
~ Dr. Gordon Cohen, co-director of Children's Heart Center
Alethea's recent surgery is a good example.
Even under the best of circumstances, the surgery is quite complicated: TGA occurs when the pulmonary artery is attached to the left chamber of the heart and the aorta is attached to the right.
Instead of carrying blood from the body into the lungs to add oxygen, the pulmonary artery pumps oxygenated blood back into the lungs.
At the same time, the aorta carries blood back from the body into the heart without first oxygenating it.
The surgery to switch the arteries gets more difficult after the third week of life because the chambers begin to weaken due to the defect.
Dr. Gordon Cohen (right) and Dr. Lester Permut
Some patients who have an arterial switch procedure when older, like Alethea, are put on a ventricle assist device (VAD) to allow their heart muscles to strengthen after the surgery.
VAD technology is relatively new to Children's — Dr. Cohen had found the tool highly effective while at Great Ormond Street Hospital for Children in London and recommended Children's acquire the technology when he arrived.
In Alethea's case, a team of three perfusionists stayed by her side around the clock during her three-day recovery to monitor and operate the partial artificial heart that kept her body functioning until her heart began working on its own.
The hospital's extra corporeal membrane oxygenation (ECMO) circuit machine is a case in point.
Children's is the only hospital in Washington state with a pediatric ECMO program. ECMO is a heart-lung pump that provides support when a child's heart or lungs either fail to work properly or need rest.
Children's also improved its heartlung bypass pump and strategy during the review. Staff perfusionists used their expertise to modify the equipment to make it more efficient as they treat smaller patients.
Children's Heart Center is also the only pediatric program in the Pacific Northwest that has VAD.
Although it isn't used often, the VAD helps provide short-term medical support to the left ventricle during the recovery period following surgeries such as Alethea's.
Five months after her surgery, though, the device is one of the last things Matthew Bloedel thinks about when he looks at his healthy 6-month-old daughter.
"She's a very happy baby who smiles a lot," he says. "She's like any other baby — with a big scar on her chest."
People, coordination, equipment
Dr. Lynn Martin
Although Children's has done heart surgery for decades, the program took a quantum leap forward two years ago when Dr. Cohen agreed to lead the team.
Rather than performing surgeries right away, he led the team in a review of practices and procedures, looking at every step of the process from the moment a heart patient's family enters Children's through the child's release.
Among his first moves was to hire a surgical partner, Dr. Lester Permut, whom he recruited from New York Medical College.
"His goal was to get a small group of people doing the same thing day in and day out so there would be less chance of making mistakes," says cardiac surgery nurse Aaron Grassley, RN.
Often, an outcome is impacted more by the little decisions made along the way. We think that standardization adds another layer of protection to patients undergoing pediatric surgery.
~ Dr. Lester Permut, heart surgeon
"There was a lot of discussion on how things were going to be done, the types of equipment we'd use, and how Gordon and Lester wanted the operating room, anesthesia and the intensive care unit to function together."
"The number one goal in reorganizing the heart surgery program was to improve outcomes for the patient," Dr. Permut says.
"Standardization becomes interesting because Dr. Cohen and I were practicing independently. Even though the end product was the same, a lot of the steps in between were done differently. Often, an outcome is impacted more by the little decisions that are made along the way. We think that standardization adds another layer of protection to patients undergoing pediatric surgery."
The focus on teamwork and communication has had a far-reaching impact on the overall program.
From the OR to the ICU
Transitioning patients from the operating room to the intensive care unit is one example. The time when a patient is taken off the heart-lung machine and is recovering from anesthesia is a crucial, vulnerable period.
The intensive care team now enters the operating room during this time, where the patient is most stable, to learn about the patient's specific physiology, pre-op treatment, the surgical procedure and the anesthesia administered.
The intensive care team then helps the anesthesiology team transport the patient to the intensive care unit (ICU) for their next stage of care.
In the past, the patient was transported to the ICU, where the intensive care team waited to hear the report and take over care.
"Because this change has improved communication among the different specialists involved in care, it has improved care during the critical time when a patient is initially recovering from surgery and anesthesia and begins to sustain critical organ functions independently," says Dr. Lynn Martin, a cardiac anesthesiologist and director of Children's Anesthesiology department.
In addition, the family has a chance to meet with an ICU nurse after surgery and before a heart patient is admitted to the unit to discuss what can be expected after surgery, says Clinical Nurse Specialist Deb Ridling.
"Families are meeting their bedside nurse and getting their information and seeing the exact same person throughout the process," Ridling says.
Parents are also welcome to sit in when doctors do rounds and discuss their child's care.
"Heart surgery is very frightening for families. Having information and knowing the caregivers helps them feel more confident about their child's care," says Cardiopulmonary Perfusionist Renee Dickey.
Communication and coordination
Communication within the team has also increased.
Dr. Cohen favors a collegial atmosphere where all staffers are free to express their concerns. Nowhere is it more apparent than the Friday morning conference when the entire staff meets to review the cases from the previous week and discuss the schedule for the following week.
At the same time, the focus on coordination of services allows the patient to avoid surgery when safer, lower-impact procedures will achieve the same outcome.
When a child has an atrial septal defect, most hospitals would fix the problem with open-heart surgery. At Children's, interventional cardiologists Drs. Tom Jones and Troy Johnston would use a catheter-based procedure to close the hole and the patient could go home the same day.
As a result, surgeries that made up 10 percent of the center's surgical practice in 1999 now make up less than 1 percent.
Another thrust of the revamping was making sure the program had the equipment and personnel required to meet patient needs, allowing Children's to handle cases that other hospitals turn away.
Factoring in Factor 7
Deb Ridling, clinical nurse specialist, Pediatric Intensive Care Unit
Though the Heart Center relies heavily on state-of-the-art tools and staff expertise to take care of patients' cardiac needs, these aren't the only tools available in the battle to save children's lives.
Children's also has Novo 7 (also called Factor 7), a new drug that allows surgeons to operate on patients who otherwise couldn't have a surgery due to the risk of excessive bleeding.
When the expected bleeding occurs after the surgery, the drug prevents the need for excessive transfusion, says Dr. Gordon Cohen, chief of cardiothoracic surgery and co-director of Children's Heart Center.
The cost of the new drug is offset by the reduction of extra time necessary in the operating room to deal with complications arising from excessive bleeding.