Hope and Heartbreak

I continue to be thrilled and astonished by the growth of The Faces of CHD.

Click here to learn more about The Faces of CHD.

I try to read every pin that goes onto the board.  It has made for a very emotional few days for me.  The notes from parents and adult survivors that accompany each pin submission are not only enjoyable to read, but often very humbling.  It is a privilege to meet so many who have fought so courageously.

Some of the letters that I read are truly heartbreaking, as I learn of a family’s recent loss.  Losing a child of my own doesn’t make it any easier to hear about the death of another child–knowing the pain of that loss makes it all the more poignant to realize what their family might feeling.  Early on, one mother submitted the story of her child’s brief life with this note, “Is it all right for [my child] to have a pin, even though he’s not a survivor?”

It absolutely was, and that child joined my own little girl as one of the angel faces representing CHD.  Many others have followed, their stories of life ending too early right alongside those of the teens and adults who somehow–miraculously, even–have lived to tell their own story.

As great as it would be to only find miracle stories on the board–stories of children and adults who just had that one surgery and are living life trouble free–the sad reality when it comes to having a CHD is that not everyone gets the miracle they hoped for.  Sometimes, instead of the obvious miracle of an uneventful surgery, successful repair, and speedy recovery, we have to go looking for the miracle.  Perhaps in your child’s life, the miracle was that you had time to hold your baby in your arms before he passed.  Or that you got to spend a month at home before your child died.  Or that daddy made it home from his business trip before your child’s final hours on earth.  Miracles of technology are keeping some alive; for others, the miraculous treatment they need has yet to be discovered.

mir-a-cle

noun

1. an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is
ascribed to a supernatural cause.
2. such an effect or event manifesting or considered as a work
of God.
3. a wonder; marvel.
– Random House Dictionary

With two of my four children born with congenital heart defects, I’ve had the opportunity to witness many miracles.  I’ve seen the baby that some doctors didn’t hold much hope for leading a productive life grow into an active, precocious second grader who has big plans for her own future.  And I’ve seen the baby that we were warned might not survive the pregnancy go on to live more than 400 days.

Chief of the Medical Staff, a painting by artist Nathan Greene, as seen on the blog Living For Eden

It is my hope that as more and more people outside of the CHD and medical communities learn about the difficult realities of congenital heart defects, they will be inspired to advocate for desperately needed funding, research, and legislation.

Fellow heart mom and editor of The Faces of CHD Pinterest Board, Stefenie, has been sharing facts and statistics on her blog about CHDs.  Here are some of those that struck me, about the frequency and mortality rates of CHDs:

•Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD. 
•Congenital heart defects are the #1 cause of birth defect related deaths.
•Congenital heart defects are the leading cause of all infant deaths in the United States.
•Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

As a heart mom and member of the CHD community, I ask you to please be a part of making the miracles that will help all those with congenital heart defects look toward a brighter future with even better care for their complex needs.

If you are reading this, and have suffered the loss of your own child, then I would like to share with you something that has made the loss of our own child  bearable.  That loss is only temporary.  Families can be reunited after death, because families are forever.

Comments

  1. Yes, the many faces that grace our Pinterest board have some amazing stories. Some are down right heart breaking and make me tear up reading them. It is through the sharing of these stories that we are able to get the shocking statistics out there. To remove the blinders on the eyes of those who have bene living the same way we were living before we knew about Congenital Heart Defects. These stories also provide one very important thing…..that there is HOPE for heart defects as well. Thank you for creating this board and allowing me to be a part of it. I am amazed each day how it continues to grow and spread!

  2. The board has been killing me. Seriously, I have cried and prayed over each story.

  3. Many years ago while working as a nurse liaison between a pediatric home care agency an the local NICU in central Massachusetts I had read this story “Welcome to Holland”. It brought so much comfort to so many of the families I worked with at that time. I have thought of it many times since then and had lost my copy. I am so grateful to have found it again. Thank you, Bonnie

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