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Wednesday, August 26, 2009

Reflections on having a child with CHD

Tonight I am feeling a little reflective. I think every ones lives change when they have a child, but I think our lives changed even more when we found out that our child had a Congenital Heart Disease. It was like we were children ourselves who were forced to face the hard reality that our child may or may not grow up to be an adult. He may never get married or have children himself. While Tetrology of Fallot is one of the most repairable of the Congenital Heart Diseases, with every procedure comes more risk. There isn't a moment that goes by that we do not worry if he is OK. We ask each other, "does he look blue to you?" Then wonder if we should call the pediatrician to get his oxygen levels tested. His heart will never be like yours or mine. It will always be a repaired heart. His heart leaks and someday he will need another surgery to replace his valve.
Tonight, I found out another heart baby has passed away. My heart is aching for her family. http://oliviahuelsbergen.blogspot.com/
While I have a strong testimony in my Savior Jesus Christ and his atonement, at times I am scared and angry. Angry that while Congenital Heart Disease is the number #1 birth defect it receives very little in terms of research dollars. How can we not pay attention to something that affects 1/100 children? One article that was written in the WSJ last week said that doctors often don't have the equipment or tools to treat children without a little guess work because the procedures and tools were not designed for them, but rather for adults. The are also left guessing on the amount of medication given to these patients. After our son had his surgery, I had to drive to several pharmacies because ours didn't carry that medication. While I am grateful for the American Heart Association they spend the majority of their budget studding preventive measures for adults. You read that right preventive! So that you and I can live a longer life, but children aren't even given that same chance. We can prevent heart disease by the choices we make, but congenital is something that you are born with.
Today hug your babies a little closer. Tonight pray that we can end the fighting. May we start putting our energies into finding a cure for Congenital Heart Disease.

9 comments:

laméditerraine said...

I'm so sorry that youe baby has that CHD,I never heard about it before but it looks so sad and painful.
I'm sure that you take care of him so well that he'll grow up in a perfect way .

Kisses and thank you so much for visiting, I really appreciate your comments :)

sweetpea said...

What a sweet boy. I hope that more research dollars can be put towards fighting CHD---

Cris Siqueira said...

i'm really sorry about your baby and i really hope he have a long life and full your life with hapiness!
it's such a shame what you talk about the tools, this shouldn't be like this. they ahev too find a way and soon!!

Andi said...

What a great, informative post. I love that you have such passion for your child and helping others that may have CHD.

travelingmama said...

I cannot even imagine how this has affected your lives and his and somehow I know that God is good even when the circumstances in our lives are bad. My cousin just lost her 9 month old to a heart defect. Apparently the valves in his heart were reversed and they did everything to help him, but in the end the just couldn't. I wept my eyes out because her little boy was born around the time the Landon was born and he I was holding my perfectly healthy son... and it just didn't seem fair. I just don't get why there isn't more research put into helping children.

I pray God's strength, grace, blessings, and healing for you, your family, and your sweet son!

Dim Sum, Bagels, and Crawfish said...

Thank you for this moving and motivating post. It is a shame that more attention and funds aren't focused on this...I didn't realize it was the #1 birth defect. I will be keeping your son and your family in my thoughts and prayers. Thank you for all of the recent comments. Nice getting to know you.

Le blÖg d'Ötli said...

I have friends that have a girl (15 years old today) who grew with this problem... I have friends with children that have different diseases... and I admire they courage... and the love they give all around... You're right, we must put our energies to try to find a cure... and I know women or men will find it !

fuoriborgo.com said...

I have to admit that although it is clear that more research is needed for many of the chronic, congenital etc diseases, I lost some faith in medicine in general as an exact science a while ago. But I do hope that a cure will be found soon for congenital heart disease. My daughter has lungs and breathing problems, sickness can be life threatening for her, and as fall approaches I find that we are all becoming more and more tense. We'll soon be monitoring her breathing, wondering if we can detect any signs of something not quite right etc (PS I'm actually considering investing in a oxygen level monitoring machine) Hugs to you and your family.

MODsquad said...

Oh, my heart is aching for this family. I can not even begin to imagine. My prayers go out to them.

Thank you for speaking out on CHD. We all need more awareness. Keeping you in my thoughts and prayers too!