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Today it's been 5 years since my son Matthew's A.V. Canal repair. I remember the nurses: Shannon, Jaime, and Patrick....They were so good with Matthew and with my husband and I.
If it wasn't for Children's Hospital and the Cardiac wing he wouldn't be here. Thank you all for what you have done for us and giving him a chance to grow in front of our eyes! Thank you Dr. Mah, Dr. Baird, and Dr. de Ferranti we owe you the world.
5 years ago today, I placed my one week old son in Dr. Emani's hands to repair his COA. I remember it like it was yesterday, and I'm thankful every day for the care we received at the Heart Center at Boston Children's Hospital.
1 year ago today Dr Baird performed open heart surgery on Cayman. It did NOT slow him down. Today his heart is as good as new and he barely even has a scar. Thank you Dr Baird and everyone on the cardiac floor at Boston Children's Hospital.
Two years ago today we were at Boston Children's Hospital and our daughter, Emily, was having an aortic stent placed. We were told it would have to be replaced by the time she turned 2 (which was last June) but its still in place and working beautifully. We thank God every day for the amazing work of Dr. Gerald Marx and Dr. James Lock.
This weekend we celebrated our beautiful daughter, Mikayla's 1st birthday and that’s thanks to the amazing surgeons and staff on the 8th floor!! Mikayla was born with a rare diagnosis of Pentalogy of Cantrell which included several heart defects.
Boston Children's Hospital is home to a dedicated Cardiac Neurodevelopmental Program, part of the #1 ranked Heart Center in the U.S. The Cardiac Neurodevelopmental Program serves children with congenital heart disease, and the people who love and care for them. The Program supports patients throughout childhood and into early adulthood:
Thanks to medical advances, children born with complex congenital heart defects (CHD) now usually survive into adulthood, and often enjoy relatively healthy lives. However, children with a history of heart disease are more likely than other children to have developmental, behavioral, or learning challenges. They sometimes experience problems with:
Jane W. Newburger, MD, MPH, of Boston Children's Hospital's Cardiac Neurodevelopmental Program and Janice Ware, PhD, speak about the long-term view after pediatric open-heart surgery.
At the Cardiac Neurodevelopmental Program, we work to help children with heart disease thrive, not just survive. We use an early detection model to:
The program uses a compassionate, family-centered approach to diagnose and treat neurodevelopmental disorders. We partner with each family's local pediatrician to develop a transparent, multi-disciplinary approach to care. Informed by cutting-edge research, our clinicians develop an individualized treatment program for each child.
Since we are located in Boston Children’s Hospital, we are able to benefit from world-class talent across many disciplines. Our experienced clinicians understand that children with congenital heart disease need care and support that extends beyond their cardiovascular health. Our team collaborates closely with Boston Children’s specialists in Cardiology, Cardiac Surgery, Developmental Medicine, Genetics, Neurology, Psychiatry and Radiology to provide the highest standard of care in every area. We work closely with families, schools, and other providers in the community to coordinate children’s treatment plans. We work with professionals including:
The Cardiac Neurodevelopmental Program cares for children of all ages (including prenatal consultations) with congenital heart conditions. Patients are seen during their inpatient stays and after discharge in our outpatient clinic. Our patients and families come from throughout the greater Boston area, across the nation and around the world.
The program helps children reach their potential, and supports caregivers in meeting their children’s needs.
The Cardiac Neurodevelopmental Program serves patients with CHD from birth to age 24 years. Children are seen in both inpatient and outpatient settings.
At each visit, a clinician assesses the child’s development, talks with caregivers about their questions and concerns, and makes recommendations.
Psychologists and neurologists measure:
Many of our patients are diagnosed with genetic syndromes or associations in addition to their cardiac conditions. We treat patients with genetic diagnoses such as:
Not sure whether your child qualifies for Cardiac Neurodevelopmental Program services? Just ask! The CNP Coordinators will be happy to talk with you. Please call 617-355-3401 for assistance.
In 2003, a Boston Children’s Hospital research team led by Jane Newburger, MD, MPH and David Bellinger, Ph.D. published the Boston Circulatory Arrest Trial. They demonstrated for the first time that children with complex congenital heart disease are at elevated risk of neurodevelopmental problems. Their research made it clear that children with complex CHD require more than just excellent cardiac care: they require comprehensive developmental care throughout their childhoods and early adulthood.
In response to the demonstrated need for neurodevelopmental care of children with heart disease, the Cardiac Neurodevelopmental Program was founded in 2008 by Drs. David Bellinger, Ph.D., Jane Newburger, M.D., and Janice Ware, Ph.D. They assembled a multidisciplinary team of experts from the fields of cardiovascular surgery, genetics, education, cardiology, neurology, psychology, and pediatric neuropsychology. This team works together to provide innovative developmental care within a compassionate, family-centered environment.
In 2012, the American Heart Association (AHA) released guidelines describing the developmental disorders faced by many children with complex congenital heart disease, and recommending regular neurodevelopmental care. They recommended that children with heart disease should be evaluated at regular intervals, and should be referred for intervention or therapies as needed throughout their childhood. As a leader in the field of Cardiac Neurodevelopment, the Cardiac Neurodevelopmental Program follows AHA guidelines, and provides cardiac patients with the neurodevelopmental care they need.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”