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The Boston Children's Heart Center is committed to providing the highest quality care to our patients. Through individual department initiatives and institution-wide standards, we are working to improve the patient/family experience and ensure the best possible outcomes.
The following list of department quality and safety initiatives is by no means all-inclusive. Please check back frequently for the latest information.
Learn more about quality and safety initiatives at Boston Children’s Hospital.
Christina VanderPluym, MD
Deyven is the first person ever to live on a college campus with a ventricular assistive device, or VAD. He manages his own care and communicates regularly with his physicians at Boston Children’s.
“I try not to let what happened to me dictate how I live my life,” he pronounces.
When Deyven presented to his local doctor in April of 2014 with some fatigue, the last thing he ever expected to hear was that his heart was failing. At that moment, he was still trying to finish his senior year of High school with the expectation of starting Bentley College in the fall. Now, he was faced with the prospect of heart transplantation.
As his condition worsened, Deyven required urgent implantation of a ventricular assist device, or VAD, until a transplant organ was available. VADs are miniaturized pumps implanted directly into the pumping chambers of the heart that help circulate blood to the body. Due to organ scarcity, many patients wait months to years before a donor heart is available. VADs allow patients to return home and resume their lives while awaiting their new donor heart.
One of the most important requirements of a VAD is taking daily blood thinners daily to prevent clots from forming in the device, which could lead to stroke. Anti-coagulation therapies have inherent risks of clotting, stroke, and bleeding. Specific dosing is very important.
Unfortunately, Deyven struggled to maintain stable levels of his blood thinner Coumadin. On the day of his graduation, he developed a nose bleed and wondered if he would be able to attend. But the Cardiac Anticoagulation Monitoring Program (CAMP) at Boston Children’s Hospital came to the rescue. They mobilized the local emergency department to apply a special clotting solution to Deyven’s nose – and with minutes to spare, he was able to walk across stage and receive his diploma.
Today, Deyven is one of only a handful of teenagers with a VAD who not only attends university but also lives on campus. His anticoagulation therapy continues to be managed through the CAMP program, and he has had no further bleeding or clotting complications. Read more of Deyven’s story on our Thriving blog.
In 2010, the US Joint commission established a National Patient Safety Goal to reduce the likelihood of patient harm from anticoagulation therapy. By 2011, our CAMP program was providing a dedicated outpatient service with individualized care plans for these patients. CAMP has consistently performed well above the national standard.
David Brown, MD
When Rowan was sent home after his first surgery, his parents were provided with a scale to weigh him every day and an oximeter to check his oxygen saturations.
Having the tools to monitor signs of illness empowered them in the caring of their baby.
Rowan is a 1 year old boy born with Hypoplastic Left Heart Syndrome (HLHS), a serious congenital heart defect that requires 3 open heart operations to repair. The time between the first surgery, which is performed soon after birth, and the second surgery, which is performed at 6 months of age, is called the interstage period. During this time these fragile infants often face growth failure, unexpected hospital readmissions, or other serious medical problems.
At Boston Children’s Hospital, our Interstage Home Monitoring Program (HMP) was designed to improve outcomes for these infants. Working in collaboration with a national quality improvement effort, the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC), our HMP provides a way for parents and the health care team to closely follow these patients at home.
Parents are typically nervous when they bring an infant home after surgery; having tools to monitor their baby’s signs of illness empowered Rowan’s parents. When Rowan went home after his first surgery, his parents were given a scale to weigh him every day and an oximeter to check oxygen saturations. They were taught about concerning signs- “red flags”- such as lower oxygen levels or weight loss. Each week a nurse practitioner and dietitian called the family to review his progress.
Rowan was able to breastfeed, unusual for infants with HLHS who often struggle with feeding and weight gain. Thanks to his mother’s dedication, strong support from the HMP team, and the ability to monitor weights at home, he continued to thrive. Weekly contact with the health care team at Boston Children’s also provided emotional and clinical support during a difficult time.
Three weeks after discharge, Rowan’s parents noted that his heart rate and oxygen saturation were lower than usual and that he was lethargic and difficult to arouse. Knowing these were red flags, Rowan’s parents brought him to the local ER and he was subsequently transferred to Boston Children’s Hospital. Rowan was found to have a serious arrhythmia which was treated with medication, and his second surgery was able to be postponed until he was a little older, bigger and better able to tolerate surgery.
Anna Fisk, MD
When Danielle’s parents learned their unborn daughter had a cardiac abnormality, they immediately set out to learn as much as possible about her condition.
At Boston Children’s, they appreciated how the cardiac intensive care unit staff answered all of their questions while enforcing a “distraction-free environment” during direct care delivery situations.
Danielle is a vibrant young toddler who was born with Hypoplastic Left Heart Syndrome (HLHS). Her parents, Tim and Michelle, received the news of their daughter’s congenital heart defect after a routine ultrasound. They immediately researched as much as possible about HLHS, and learned that the left side of Danielle’s heart was not fully developed. She would require specialized care and surgery shortly after birth. Tim and Michelle lived in a small town in Virginia, far from a hospital. They now had to choose the best place for their daughter to have surgery.
After further research, Tim and Michelle discovered that Boston Children’s Hospital was the leading pediatric cardiac center, and performed over 800 open heart surgeries in 2013 with a 98.5% survival rate. Over 30% of these patients were from outside of New England, just like them. They decided to make the journey north and take their daughter to Boston Children’s Hospital.
As planned, Danielle was transferred to the cardiac intensive care unit (CICU) shortly after birth. Her nurse, Cathy, updated Tim and Michelle about their daughter’s condition and oriented them to the CICU environment. This included teaching them about distraction free times, which are times when the nurse will be unable to answer questions in order to concentrate on a task needed for Danielle’s care.
The day after Danielle’s surgery, her parents visited her in the cardiac intensive care unit. Suddenly, her monitor alarm sounded and Cathy called for help. Tim and Michelle watched and listened as doctors asked for adjustments to current medications and ordered new medications. The new parents were frightened- they wanted desperately to ask what was happening, to know what all these new medicines were for- but a poster in the room reminded them about distraction-free time. They waited in silence.
Ten minutes later, the room was calm again and the extra staff had left. Cathy and the ICU physician explained what had happened and answered questions about how they stabilized Danielle. After seeing the team work together so efficiently, Tim and Michelle fully understood the importance of a distraction free environment. Danielle was discharged two weeks after her surgery and the family is once again home in Virginia.
John Triedman, MD
Janey is an 11 year old girl who was suffering from frequent episodes of supraventricular tachycardia, or SVT, a condition which caused her heart to beat at very high rates. Although it is not a lethal problem, this condition can be very frightening, uncomfortable, and disruptive. SVT may result in trips to the hospital, daily medications, and an avoidance of activities that can trigger episodes, such as sports. After several visits to the Outpatient Department (and a few to the Emergency Room!), Janey’s parents decided to have her undergo a catheter ablation.
Like most patients and families who elect an ablation procedure, Janey’s parents had some concerns and questions, such as:
We attempt to answer those questions with facts. We combine our own, regularly collected and analyzed data with benchmark values derived from published information on the clinical outcomes that should be expected from medical centers operating at the highest level of skill. More than 200 ablations are performed annually on patients at Boston Children’s Hospital by the Electrophysiology Service. This procedure volume demonstrates that the electrophysiology team is well practiced with an extremely high level of proficiency.
Janey’s procedure was successful, and she is now free of symptoms. The Electrophysiology Service is proud of our ability to provide services safely and effectively. We will continue to monitor our performance, and plan to participate in a multicenter registry – the NCDR MAP-IT Registry – which will begin in 2015. This registry will help the practice of catheter ablation to be further improved by allowing hospitals to compare their procedural outcomes and answer quality and safety questions in a collaborative manner.
Our patients are free from recurrence of SVT at the time of their follow-up in ~92% of cases, with rates of major complication that are near zero. Using new technologies, we have reduced exposure to radiation during procedures by more than 90 percent over the last 5 years without changes in our success rates.
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