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Boston Children's has launched the world's 1st program dedicated to offering hand transplants to children who qualify.
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There are many ways you can help children and their families get the care they need.
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. – providing comprehensive neurodevelopmental assessment, school consultation services and short-term treatment for children with congenital heart disease and their families.
While survival of children born with complex congenital heart defects (CHD) has improved dramatically, they remain at substantially increased risk for developmental, learning and behavioral disorders.
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.
Much of our work primarily focuses on children:
Boston Children's Hospital’s Cardiac Neurodevelopmental Program was established in 2006. The program provides comprehensive, evidence-based neurodevelopmental assessment, second opinions, consultation and intervention services by a team of specialists. Children birth to 24 years with a history of severe CHD are eligible to be seen in the program. Prenatal parent guidance consultations are available following early identification of CHD.
The program uses a compassionate, family-centered approach to the diagnosis and treatment of neurodevelopmental disorders, which includes partnering with each family's local pediatrician to develop a transparent, multi-disciplinary approach to care. The approach to clinical care in the Cardiac Neurodevelopmental Program is based on findings from Newburger and Bellinger’s extensive, pioneering research on thousands of children. Their work has enabled us to develop systems of assessment and treatment that focus on the unique neurodevelopmental signature of children with CHD. Evaluation in the Cardiac Neurodevelopmental Program results in the creation of individualized treatment programs unique to each child, yet based upon years of comprehensive study across huge pediatric population sets.
Additionally, we are assembling a unique registry of information that includes medical and neurodevelopmental information for each child participating in the Cardiac Neurodevelopmental Program. This serves as a rich data source for research into the effects of pediatric heart disease on neurodevelopment, with 90% of patient families choosing to automatically have their child’s information added to the registry so that we may leverage this data to help shape future patient care plans.
Our work focuses on a broad range of complex cardiovascular conditions, including large numbers of children with rare conditions who are transferred to Boston Children’s because of the hospital’s extensive experience with treating challenging and rare conditions. Our hospital’s setting enables us to leverage world-class cross-discipline talent from across the organization in order to evaluate and care for our patients like no other hospital can. Our experienced clinicians understand that children with CHD need care and support that extends beyond their cardiovascular health. We work closely with families, schools and other medical providers to:
The infants, children and expectant parents seen by our Cardiac Neurodevelopmental Program are referred from many different sources including:
Our team collaborates closely with Children’s specialists in Cardiology, Cardiac Surgery, Developmental Medicine, Genetics, Neurology, Psychiatry and Radiology to provide the highest standard of care in every area.
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 landmark work by the Boston Children’s research team led by Jane Newburger, MD, MPH and David Bellinger, PhD first identified typical patterns of development seen in children with severe CHD. Their work described the now universally accepted and unique patterns or “developmental signatures” seen in children with different forms of early heart disease.
In response, specialized cardiac neurodevelopmental programs are rapidly emerging in major teaching hospitals in the U.S. and abroad. The Cardiac Neurodevelopmental Program at Boston Children’s is a founding leader in this field and serves as a care model for other institutions around the world.
Recently released guidelines from the American Heart Association and the American Academy of Pediatrics recommends systematic neurodevelopmental follow-up from infancy through adolescence (and beyond) as an integral part of care. Boston Children’s Cardiac Neurodevelopmental Program has assembled a multidisciplinary team of cardiovascular surgeons, geneticists, educational specialists, pediatric cardiologists, pediatric neurologists, child psychologists and pediatric neuropsychologists who provide innovative follow-up care for children in a compassionate, family-centered environment.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”