Sunday, February 15, 2009

CHD (Congenital Heart Disease/Defect) Awareness

Speaking of heart health...

I must mention CHD awareness week! I suppose it is over now (ended on Valentine's Day), but I must recognize it nonetheless. As many of you know, Boo was born with a congenital heart defect (heart problem from the womb). There are many kinds of defects, some more serious than others. Some children live for a long time without even knowing they have a heart problem. Other children have heart problems so severe that they require surgery almost immediately after birth. Boo was pretty much one of these children. He had his first open heart surgery at 1.5 months and his second at 5 months old. Now his heart is "fully repaired," although he will likely need valve replacements in the future. We are blessed in that Boo's heart defect is reparable, and that it is one of the defects that has been studied and had surgical procedures developed for a long time. Children with other defects are often not so lucky.

Honestly, I do not know very much about the purpose of CHD week, but I have been thinking about it all week and what it means to me. Here are some of the reasons I think it is important to be aware of the occurence of CHD:

1. Kids with CHD can have a variety of special needs, one of which is donated blood. This is something that most of us can do, and it really does save lives. Boo has received about 10 blood transfusions in his life.

2. Also, while Boo's defect has been well researched, there are many others that have not, and there is always more research to be done. So far, there are no known causes or ways to prevent CHD from occuring. We can donate money to help fund such research and to develop new procedures. Websites to visit include: http://www.childrensheartfoundation.org and www.intermountainhealinghearts.org. Were Boo to need his valve replaced right now, he would have to have another open heart surgery and he would have to have it replaced every 5-10 years for the rest of his life. But with the research they are doing now, this procedure could be done in the cath lab (without opening his chest - lower risk), and they are also working on getting valves that last longer. This could make a HUGE difference in our lives! The more surgeries Boo (or any other person, for that matter) has to endure, the worse. The worse on his lungs especially. So this is very important.

3. Finally, one of the most important reasons for all of us to be aware of the occurence of CHD (1 out of 100 babies born has a CHD), is that these families need support. Certainly our family has been blessed with GREAT support from family, friends, and church members. We also joined a support group for families of CHD kids and adults with CHD. Even with this support, it is very difficult to be a "heart mom." There are so many emotions involved and so much to learn. And so much worry and anxiety! And so much joy in the little things, often things you would never notice with any other child. And so many blessings. But yes, it is hard, and you do cry, and you do wonder about the future, and you do hope that you are doing what is best for the child without really knowing what that is, and you do put your child's life in the hands of competent medical professional strangers on numerous occasions and put all your heart and soul into praying that Heavenly Father will somehow take care of your little one when it seems impossible, and you do sit in the surgery waiting room while your child's heart is literally stopped thinking that your own heart might just stop too from all the stress, and you do always have the background stress of making sure your child always stays healthy since the smallest little cold could mean life or death. These are things that "heart moms" go through all the time. And certainly it is not just "heart moms" that need support, it is the whole family.

P.S. I am not currently in desperate need of support or anything. We are doing well and we expect this trend to continue. :) I share this point only to help others understand the stresses that come to families dealing with CHD on occasion (sometimes long occasions, sometimes short). But like I said, right now we are doing fine. (Although that getting-sick-background-stress stuff is VERY true for me! Please kindly keep your distance if there is any chance you may be sick. :)

Ultimately, I would like to say that I am VERY happy to be Boo's Mommy! I love him so much. I wish he did not have to go through so much pain, and I wish that I could experience it for him. I am glad, not that he has been so sick in his life, but that we could experience the great joy that comes as great difficulty and sadness and stress is overcome by miracle after miracle. Boo brings a joy to my life that I do not believe I would know otherwise. CHD is bitter, but life with Boo is so sweet.

So, Happy Valentine's Day and CHD Awareness Week everyone!!!! (Sorry this post is extraordinarly long and personal...)

1 comment:

The Kelley's said...

Ashley, thanks for the great reminder. I saw Matthews picture with his helmet and he looks dang cute!!! I think that when the time is right for your family you would be able to have him in his own room. We did it because we just felt like it was time. All circumstances are different but I know you will do what is right for your family when that time comes. I am glad things are going so good for you and your sweet family. Is he doing any better with eating? Alyson only eats 1 ounce by mouth at each feeding so we are struggling a little but hopefully after this surgery that will improve.