The Naked Truth About CHD

During the week of Feb 7 - 14, I posted several messages about CHD (Congenital Heart Defects). Today is a very somber day - today marks 2 years since a very special little girl lost her battle with CHD. People gathered around the world to mourn the passing of 4 year old little girl named Bethany Katrina English. I wrote about her last month on her birthday - you can read that post here. Today Dan wrote a tribute on his blog to his daughter and posted more pictures and some music videos that Bethy loved. Be sure and grab some tissue. Bethany and her family have touched many lives and my thoughts and prayers are with them today and every day.


I have also written about a little girl named Zoe who passed away from complications due to her CHD. I wrote about her and her brother Zurik here. We knew Zoe personally. We met her when she was just an infant and would see each other at our local support group meetings and CHD awareness events. Zoe went through so many surgeries and had so many obstacles to overcome - she even had to use a child-sized walker to learn to walk but she was as determined as ever. Jessica and I think of her and speak of her frequently too. Our thoughts and prayers go out to Zoe's family too

There are many, MANY babies, children, teenagers and young adults that I have "known" through online support groups who have died because of the heart defects. They had loving parents who did everything in their power to help their children. Many surgeons, pediatric cardiologists, nurses and other specialists have fought long and hard trying to keep these precious children alive. Many CHD children can live fairly "normal" lives so long as their hearts are holding up. Some end up needing pacemakers, defibrillators, numerous palliative heart surgeries or even heart transplants. Many times they suffer complications to surgeries such a strokes, collapsed lungs, blood infections, blown veins from numerous IV sticks, edema from retaining fluid (these are just a few possible complications - all of which my brave daughter has suffered through). Like my daughter they can live in congestive heart failure teetering on the edge between being dehydrated or having their lungs fill with fluid - for years.

The naked truth about Congenital Heart Defects isn't pretty. It isn't fun and these children didn't ask for it. Their parents didn't cause it and there is NO CURE for it.

My daughter has survived numerous lung bleeds caused by her heart and pulmonary artery defects. She has survived being blind and paralyzed following strokes. She had to learn sign language to facilitate speech following a stroke which affected the speech area of her brain. My daughter's body is deteriorating due to her heart defects and the lack of oxygen. She doesn't have the stamina to go to school or go out and to "regular" kid things very often anymore. BUT we are still here and we are still fighting. We still fight to have a quality of life that is worth living. We fight to be able to have one more birthday celebration, one more Thanksgiving and one more Christmas together. In the end, CHD will claim my daughter's life too. My husband and I just paid the last payment on the cemetery/mortuary plan we set up for Jessica. We set it up several years ago and have been making payments until now. It's both a relief to not have to pay it anymore but overwhelming because we know that we need it - that some day we will have to use it. For now I pray that day is a long way off.