Every February I write an informative letter about “Congenital Heart Defect Awareness Week.” Inspired by the Congenital Heart Information Network, the intention has been to honor heart children and adults navigating life and the medical system, commemorate brave individuals who have fought and passed, offer resources to families, and encourage community action and funding that will ensure the healthy future I expect for my daughter Cora and her heart peers. In reproducing the list of resources, I send thanks for the advocacy and support we have appreciated for the last eight years, and for the ability to share these services.
In recent years Cora’s name has been absent in an attempt to balance advocacy and respect for her privacy. Cora has become proud of her heart and has expressed interest in sharing her own story in the hope of helping others, knowing the support she has received from incredible medical staff, volunteers, family and friends.
This year with the guidance of The Congenital Heart Information Network we are celebrating. Proclamations for CHD Awareness Week in Connecticut and the town of Southbury.
When Cora was six years old, she spoke to her class about her cardiology visits. Last year she enjoyed meeting the First Selectman to present him with information when receiving the Southbury Proclamation and will do so again this year. She spoke to her school’s second grade classes about her heart and discussed how many live with issues that cannot be seen. This year she has requested to talk to her school, and will give a presentation to the 5th grade students participating in “Jump Rope for Heart” on how to care for their own hearts. CHD Week for us is a bittersweet reminder of her first years; how often we went to hospital, that sinking feeling when she had to be re-admitted due to an unsuspected heart issue. We recall celebrations over a few milliliters of liquid taken by mouth, waiting for the doctor to return from a surgery or heart catheterization with good news, excitement over developmental milestones that she worked hard to achieve.
I remember the comfort of my husband, family, and friends while the recuperation times went on like a roller coaster with no brakes. I recall the care packages we were sent off with and received in hospital, and the meals that helped us settle home. Volunteers who were the personification of altruism. Medical staff who became heroes. Waiting and praying for the ability to chew, gain balance, gain strength, to receive a good cardiac followup report. We graduated from a brick sized oxygen testing device to a finger clip kept in her school backpack. There is no way thanks can ever be adequately given.
Cora is one of the many brave, beautiful kids who inspire the medical profession to continue progression in the quality of cardiac care. Cora takes part in the Single Ventricle Clinic at CHOP, a proactive program that monitors the effects of her condition in relation to the whole system. There is an informative page about the program that accepts monetary donation to further their research and care as we believe their work will be of benefit to many others.
There has also been promising research with 3-D, or bioprinting which may increase life expectancy and reduce issues related to transplant. The benefits expand beyond saving heart patients as other health concerns are addressed.
This year’s letter becomes more personal as one of Cora’s goals is to help other families through her own experiences. In sharing the resources I am also listing ideas that we have learned. While financial donations are helpful, your time and effort can be as influential: Contact a family who is in hospital and offer concrete assistance. It is sometimes difficult to respond to “what can I do to help?”
Contact a Child Life department in your local children’s hospital to offer voluntary time or toys. New items are usually requested for hygiene purposes. Your network connections and personal skills may also be valuable to the department’s needs in helping children, their siblings and parents adapt to a hospital stay.