Letter shared by Val Guerin…who sends a CHD awareness letter out each year to family and friends. This was the highlight of our week…and there is absolutely no way we could have said any of this better. Thank you Val, for all you do. And to little Cora for being the HLHS fighter she is! You are 1in100.
While preparations are being made to celebrate hearts for Valentine’s Day, families affected by congenital heart defects recognize February 7th to the 14th as Congenital Heart Defect Awareness Week. The intent of this letter is to promote awareness and understanding through education, resource provision, and to suggest ways you can help. It is also to celebrate the efforts of children and adults who live with congenital heart defects (CHDs) and to commemorate heart Angels who are no longer with us but who continue to inspire through their bravery in life. The hyperlinks in this letter are references as well as resource sites that may be valuable to other families.
Congenital heart defects occur even with excellent pre-natal care. Pre-natal scanning has enabled families to prepare for surgery before birth (Children’s Hospital of Philadelphia). Surgeries have even been conducted in utero (Children’s Hospital Boston). There are 35 known defects, and approximately 40,000 babies with CHDs are born each year in the US (Little Hearts, Inc.).
While CHDs are the most common birth defect, there is a lack of government funding (Children’s Heart Foundation) and care centers for the increasing number of adults (Adult Congenital Heart Association).
The State of Connecticut has granted a proclamation to recognize Congenital Heart Defect Awareness Week, but this remains a temporary measure. A federally recognized week would increase the amount of funding for research and support for families. The Congenital Heart Information Network provides information on how you can contact local government representatives.
Another important facet of awareness is the implementation of routine pulse oximetry screeing for newborns to prevent loss of life due to undiagnosed heart defects. Little Hearts, Inc. published a member survey that found only 2 out of 100 babies were screened at birth for congenital heart defects. History was made this year as the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children made a recommendation to the Department of Health and Human Services for pulse oximetry screening to be part of every newborn screening. A Heart Mom and advocate who has been tirelessly working toward this goal details the progress at 1in100.org.
Children with CHDs may not present with outward symptoms. Many children have great endurance and participate in a multitude of sports. Alternatively, the older child in a stroller is not lazy, but may have weak stamina. The child sitting on the sidelines of a group activity may not be shy, but physically unable to participate. The baby diagnosed “failure to thrive” and the very thin child may not be results of physical neglect.
Many children with CHDs have endured at least one surgery in their lifetime and countless procedures ranging from clinical checkups such as electrocardiograms and echocardiograms to heart catheterizations, further surgery, and possible heart transplantation. If you would like to directly help inpatient children, Saving Little Hearts provides care packages and accepts sponsorship donations. TCHIN assists families with expenses during long hospital stays or visits far from home. Heart Support of America also provides grant funding to families.
Thank you for taking the time to read this letter. There are several support groups listed which offer various types of assistance but all work toward improving life for children and adults with congenital heart defects. If you use your writing skills to contact local legislators, your time to read about CHDs, forward this to a newly diagnosed family, or donate financially, you are an important part of the care for hearts that I believe is a true emphasis of Valentine’s Day.