Becoming AWARE

by: Tricia Christensen

On February 14th, California and virtually every other state in the United States celebrated Congenital Heart Disease Awareness Day. Families intended to bring awareness to the general public about what it means to parent a child with Congenital Heart Disease (CHD). Most don't know CHD is the most common of all birth defects, present in one in one hundred live births. CHD comprises a range of defects from the very minor to the very severe, and half of these children undergo at least one if not more surgeries. In the process some lose their lives.

Today, the outlook for CHD is better than it has ever been. Surgical intervention and medicines save many children. Still there those who cannot be helped, those who are not diagnosed in time, and those who suffer a very heavy burden of illness despite medical interventions. Adults with CHD additionally can find themselves with great difficulty obtaining insurance, being able to work a steady job, finding lasting relationships, and for many women with CHD--being unable to have children because of their heart condition. CHD affects over a million children and adults, and yet the public does not demand dollars for research into this most common defect. Support services for those affected remain in their infancy. While two national groups exist, one internet and one offline, the problem of funding these groups, and their local sisters remains a sincere problem.

I speak from the experience that only a parent of a CHD child can have. I have watched my child suffer through 3 open heart surgeries, kissed him goodbye at the O.R. doors wondering if I will ever see him again alive. While parents of children with any chronic illness have an extraordinary burden to bear, they also have been gifted with some very special things. They see clearly how uncertain life is, as they have seen their children float to near death and back again. They view the day as another chance to love and to assure their children of their love, to not regret, to not look back but to move forward making each day special. The steady ignorance about CHD makes our paths quite frustrating.

With CHDs random and rarely heriditary, a family bringing a CHD child into the world often has little to draw on from their own family resources. Even if CHD affects someone else in the family, it is often a disimilar defect as there are 35 recognized defects. I remember being barraged with information about one child who was my 3rd or 4th cousin and several times removed. "He had a surgery and then he went off to be a high school football star." For my own son, who will probably never set foot on a field unless he is a coach or referee, this is not encouraging. But people like to dismiss the consequences of having a CHD. The fear of a child dying hits too close to home. The effort to cheer up the dismayed parent is well-meant but nevertheless entirely inappropriate. Families need patient listening instead, and permission to range through the many stages of grief and recovery. For those without CHD children a learning opportunity awaits. If listening to a friend takes you home to hug your children a little closer, to feel the blessing and the miracle in having a healthy child, then you have helped your friend and yourself.

People often ask, "What can I do?" I suggest that you just start making suggestions of what you can do. A trip to the grocery, babysitting for siblings, cleaning house, making meals or doing laundry are all things we can do to help a new parent with a CHD child. Awareness for CHD families means opening the eyes of those around them to the beauty, tenuousness and fragility of life, and of honoring the unseen heroics of all who parent a chronically ill child. For in each day, heroism occurs which no one will see or remember. Acknowledging this is a new and radically different action.

You will come into contact with parents of special needs children. It may make you uncomfortable at first, scared of the future of your own children. But if you can reach out in friendship and love the benefits go two ways. We all like to forget that death is a part of life, that we cannot control the acts of Nature. A path toward englightment awaits those who live this way daily. I urge you all to become aware of the many around you walking that path. Join with them in spirit and then awareness will not merely be a catch phrase or a one day thing, but a life path that brings us all closer to understanding the human condition.

Organizations that can help you:

• Hearts for Hearts' Sake Support Network
  4050 Princeton Drive
  Santa Rosa, CA 95405
  (707)525-1558 (contact Tricia Christensen)
  triciac@heartsforhearts.org
  http://www.heartsforhearts.org
  

• The Children's Health Information Network
  http://www.tchin.org
  (contact Mona Barmash)
  

• Kids With Heart- National Association for Children's Heart Disorders
  1-800-538-5390 (contact Michelle Rintamaki)
  http://www.execpc.com/~kdswhrt/
  

Send mail to aj@babyheartspress.com with questions or comments about this web site.
Copyright © 1999 - 2002 Baby Hearts Press

Return to Home Page