One of the longest living Heart Transpants Dies

Check this out. He live 30 years with two different hearts. Nick is at 24 with the same heart.

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Please Comment

The last day to comment on the policy regarding transplant surgeons and physicians is tomorrow. If you haven’t done so I ask you to please consider doing so.

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Report on congenital heart surgery outcomes is made available to public


The Society of Thoracic Surgeons has made public its first report of pediatric and congenital heart surgery outcomes from the Congenital Heart Surgery Database. The report included four-year observed, expected and risk-adjusted center-level surgery-related mortality rates for the aggregate of all patients at the 25 sites who agreed to publicly report.


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Please read and comment

Dear transplant families and friends,

 I am writing to you today as a parent of a pediatric transplant patient to request your help in advancing the care of pediatric transplant patients across the country.  The United Network for Organ Sharing, or UNOS, is the organization that manages the national organ allocation system and distributes organs to transplant centers like ours.  One of their tasks is to define which surgeons and physicians are eligible to lead a transplant center.  Currently, every transplant center has a surgeon and physician who has been deemed qualified by UNOS criteria to run that program and to transplant that specific organ (heart, lung, liver, kidney, etc).  However, despite several efforts in the past to define pediatric transplantation as a specialty separate from adult transplantation, UNOS has been unable to develop such criteria.  Therefore, as it stands today, a pediatric transplant (transplant in a child <18 years of age) may be done by a surgeon and managed by a physician who have absolutely no pediatric experience or training.  They may even transplant a 1 year old even though they have never cared for a one year old before! 

On January 27, 2015, UNOS made a policy proposal available for public comment that aims to correct this major flaw in the system. I would ask for your help with getting this proposal approved.  Please review the public comment proposal at the website below and let UNOS know what you think.  I would strongly encourage you to support the proposal as it is a major step towards assuring that all children across the country receive transplant care from physicians and surgeons who have pediatric specific transplant training.

 Thank you for your help in this important matter.”

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“Little Hats, Big Hearts” Generating an Over-the-Top Response

red hats4

Volunteers for the American Heart Association and Mended Little Hearts are knitting red hats for all babies born in February at participating hospitals to raise awareness of congenital heart defects. They hope to have as many babies as possible in February wear red knit hats so there more people are aware that some babies are born with heart disease.


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Nick’s Heart Cath

Nick had his bi-annual cath yesterday. He got a good report. The only concern is that his coronaries had narrowed a little. This is to be expected after almost 24 years post transplant. Plan is to put him on medicine that will help with that.

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New Affordable Care Act Fact Sheets for Families

Created by the National Center for Medical Home Implementation and the Catalyst Center, these four fact sheets highlight provisions of the Affordable Care Act which benefit children and youth with special health care needs. Each fact sheet is written in plain language, making the content easy to read and understand.

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January is Birth Defects Prevention Month

Birth defects are common, costly and critical. Every 4 ½ minutes a baby is born with a major birth defect. Become an active participant in Birth Defects Prevention Month and join a nationwide effort to raise awareness of birth defects, their causes and their impact.

Not all birth defects can be prevented; however, all women, including teens, can lower their risk of having a baby born with a birth defect by following some basic health guidelines throughout their reproductive years.  This year we are encouraging all women to make a PACT for prevention.

Plan ahead
Avoid harmful substances
Choose a healthy lifestyle
Talk to your doctor

Women and their loved ones can participate in their PACT and take these important preventive steps that can lead to a reduction in the number of birth defects.  Learn more about the effect you can have on birth defects at

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Healthcare Provider Understanding of CHD Coping Skills for Adolescent Patients and Their Parents

A recent study in the Journal of Cardiovascular Nursing evaluated and compared adolescent patients’ and their parents’ coping strategies and knowledge of congenital heart disease (CHD). While parents demonstrated significantly higher knowledge about CHD than their children, the authors noted that adolescents with CHD who adopt their illness as part of their lives using their own knowledge and task-oriented coping strategies demonstrate higher resilience. Both adolescents and parents who indicated a religious background scored higher on emotion-oriented coping than did those who did not report a religion. The authors concluded that it is essential for healthcare providers to understand how adolescent patients and their parents differ in coping with stress and the degree of their respective knowledge about CHD. Effective intervention plans for adolescent patients should be structured, continuous, and address both the patients’ and parents’ coping skills and knowledge of lifelong CHD care, according to the study.


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New Heart for Hunter

A young man Hunter Cain is waiting on a new heart.  Check out the website and think about helping.


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