Wednesday, February 21, 2007

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.

7 comments:

jenny said...

thank you, Nancy, for you honesty about all of this....hugs to you.

Terri said...

OMG... this is so very sad...
I feel all depressed!
It's soooo freaking scary...

I HATE CHD! HATE IT HATE IT HATE IT. I hate what it's done to me... and others.

I try to be brave every single day ... but then I break down when I'm away from home...(like I did at work last Sunday ~ yes I work 3 hours on Sunday mornings)and cry my assets off...
I'm so busy trying to be brave when deep down inside I'm a mess...
I have my little mask on every day...

I hate it...

I hate knowing that at anytime my boy can be taken away from me...
makes me sick.

I feel soo sad for those poor families that lose their children for whatever reason.

Awesome Mom said...

It is so sad that we have to have the tough discussions like what to do with a child in case they do not make it through a surgery. My husband and I had that discussion the day Evan had his stroke not knowing that he would be having it later that day. It stinks big time that you will outlive your beautiful daughter.

I guess that is where having faith really comes into play. It is so wonderful to have the knowledge that your separation from Jess will be only temporary, that you will get the chance to see her again and that her heart will be whole. That is the only thing that keeps me from turning into a gibbering mess. It was the lifeline that I held onto when we only had the knowledge that Evan had a complex heart defect with out knowing how it would affect his life or ours.

Nancy said...

You are so right about faith. I was talking to my middle son, Brandon, the other day about faith and life after death. I teared up as I told him how nice it will be for Jessica when her body won't hold her back anymore. She won't have to wear oxygen and she will be able to run and play all she wants. She won't be so insecure and she will be able to be independent. Everything she longs for now. He quietly nodded and agreed.

Nancy said...

I'm sorry, Terri, I didn't mean to bring you down. I've been kind of emotional lately and sitting up with my daughter night after night has been wearing on me.

I wear that mask too. Some days are better than others but the uncertainty is always there.

One thing that I has been a blessing is that I don't take even one day for granted. Not one smile or one hug will go unnoticed or unappreciated.

I appreciate my boys more too. Even though they don't have a life-threatening illness, they won't ever be this age again. I want to enjoy them too. And my husband. You know how dangerous his career is - yours is in the same field - we appreciate each other more because of Jessica.

We pray together as a family every single night and thank Him for the day that we've had together. It doesn't matter who says the prayer, we always thank Him for this day. Now what a blessing that is!

Flawed & Disorderly said...

Nancy, no parent should have to buy a burial plot for their child. I have no words to express how that makes me feel for you other than it makes me want to scream and cry.

I just came over to get the link to your blog. Also, if you ever feel up to it, I'm tagging you for that 3 songs post...3 songs you'd choose if you could never listen to any music but that ever again. It's on my blog. It may not be appropriate for your blog, but if it would pick up your spirits or sound like fun, then go for it. :D

Hugs and prayers,
Jennifer

Jody said...

Oh Nancy. Your honesty and words have just touched me so deeply.

Like Jennifer said, no parent should have to buy a burial plot for their child. (sob)

Please give Jessica a hug and a kiss from a reader who has been touched by her life.