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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.
Given the significance of family histories, Dominic Abrams, MD, of the Cardiology Department at Boston Children's Hospital, has developed a new approach to treating inherited diseases— an approach that looks at the entire family rather than just the single patient.
In 2012, clinicians at Boston Children’s, led by Dr. Abrams, and clinicians at Brigham & Women’s, led by Calem MacRae, created the Family Arrhythmia Clinic. At this clinic, individuals and families gain easy and convenient access to a detailed evaluation, discussion and formulation of an integrated family plan.
In a single, comprehensive visit, available every Friday, families are provided the convenience of a “one stop shop.”
“We seek to provide a readily accessible, comprehensive clinical service for families, in order to address the needs of all family members in a single, integrated visit, irrespective of age.”
~ Dominic Abrams, MD, MRCP, Director, Inherited Cardiac Arrhythmia Program
This all-day, all-inclusive approach was designed to make sure the whole family is looked after and is getting a clear, consistent message. It avoids the problem of having the family visit different centers, and allows us to identify similarities and variability between individuals in the family.
During the day-long meeting, children are typically seen in the morning and undergo specific investigations, while parents and other adult family members are seen in the afternoon at Brigham & Women’s Hospital. At the end of the day, findings are explained to the entire family, and a plan for further tests or treatment is presented. Not only does this strategy make clinical sense by allowing for more comprehensive interpretation of clinical and genetic data, but it also creates important research opportunities.
“Occasionally, findings in one family shed new light on our understanding of the genetic basis of one specific condition and have significant implications for other patients,” Abrams explains.
This approach requires effective communication with families and individuals prior to their visit by our specialist Inherited Arrhythmia Program nurse, including obtaining:
This information, along with any additional genetic results, will allow for the appropriate discussion in the clinic and minimize the need for repeat testing.
Clinical and genetic investigation of individuals with suspected inherited arrhythmic syndromes requires detailed evaluations by experienced physicians who have treated the spectrum of these patients—from the individual with no symptoms (but with subtle phenotypic or genetic findings), to the detailed cardiac and molecular autopsy following the sudden cardiac death of a related family member.
Most critical to producing the best outcomes is a comprehensive evaluation of all family members to establish phenotypic expression, assess segregation of genetic variants with the clinical disease process, and determine optimal treatment strategies.
Our plan will always be highly personalized, especially given the variability in all these conditions. Therefore, our risk stratification and management of arrhythmic conditions is highly individualized, determined by the specific genetic expression in any one individual. Yet we also encompass the individual’s plan within a clearly defined, overarching family strategy.
After the clinic visit, for those living at a distance from Boston Children’s, we will work with your local physicians to establish optimal, personalized care plans for all the members of your family. Throughout, you will also have simultaneous access to the state-of-art specialist clinic at Boston Children’s.
In addition, clinicians at Boston Children’s will remotely follow up with these individuals through proprietary technology that uses online interaction, family focused social media and other emerging technologies.
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.”