Monday, February 14, 2011

CHD Amareness on Valentine's Day

It's Congenital Heart Defect Awareness Month!!

Before Mason was diagnosed with HLHS on his very traumatic 3rd day of life, we had never heard of a CHD (or maybe, never paid enough attention to know that children and adults with CHD's create a very large poplulation in our world)). You always know that something could be wrong with your unborn baby, but how many people imagine that their baby could have a broken heart?? It's a terrifying and unimaginable experience.

Many parents find out during their 2o week ultrasound, but not all CHD's are identified at that time, like Mason's (And that was at the fault of nobody in our case. Mason's heart appeared to have 4 normal chambers.) All a parent wants in that nightmarish moment, whether during their ultrasound or unprepared like we were after birth, is some knowledge about what is wrong with their child and HOPE that he/she will survive.

One in every 125 babies is born with a CHD. It is the #1 birth defect in America. This year alone, close to 40,000 babies will be born with a CHD.

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.

Though research is ongoing, at least 35 defects have now been identified.
4-8% born with CHD have Hypoplastic Left Heart Syndrome --> Mason's Defect
4-10% born with CHD have Atrioventricular Septal Defects
8-11% born with CHD have Coarctation of the Aorta
9-14% born with CHD have Tetralogy of Fallot
10-11% born with CHD have Transposition of the Great Arteries
14-16% born with CHD have Ventricular Septal Defects

Miracle Mason is our Superman!
Miracle Mason is a CHD survivor!

Mason has fought for his life for 38 months now , but his battle will never be over. After going through 2 open heart surgeries his first 6 months of life, living with heart failure, and then surviving heart transplant surgery with only one healthy lung he will always have to fight off rejection! Mason will also always have to be careful of contracting infections especially lung infections. Transplant is not a cure. It is almost like trading one problem for another. But I will take the issues that come with Mason's lifesaving transplant over losing him to congenital heart disease and heart failure! He will FOREVER be on medications, will NEVER stop visiting his cardiologist regularly, and he will always have the possibility of needing oxygen therapy some day again because of his pulmonary vein stenosis .

Please consider becoming a blood donor and organ donor!

Please help us spread CHD awareness.

Their will probably never be a cure for the cause of CHD's, but with more funding and research, children born with CHD's will have a better chance of survival. Having a superman in our family has been nothing less than an amazing and joyful blessing, but many families lose their babies to CHD before they even have the chance to get to know their little miracle. I am grateful for our wonderful pedatricians office, American Fork Hospital, Primary Children's Medical Center, Lucille Packard Children's Hospital at Stanford, and of course the hand of our Savior who have all played a role in Mason's survival,

(Click on image to enlarge)

Tonight Paul Cardall is putting on his 2nd annual concert to help families affected by CHD's. Mark and I are going tonight and I am very excited! (It's not to late to get tickets!!) Last year I missed it because I was packing to leave for Stanford the next day and also needed to spend my last night home with my family. Can you believe it will be one year on the 16th (Wednesday) that Mason and I flew to Stanford, taking a huge leap of FAITH to get Mason a new heart?!!



travis and shalee said...

yay for our little man! :) i actually won tickets to pauls concert but tay is just getting over being sick so i don't dare leave her to be babysat all night so we wont be able to make it. :( i'm super bummed. but we will be going next year for sure! :) give that little man a hug and kiss for me! :)

Pianomusic821 - Kandice said...

summer I am so happy for you and mark get to go and enjoy paul's concert tonight, it is such a blessing all of us to be able to enjoy his wonderful gift. your blog is so wonderful to read. I visit it often. my mom and I too will be at paul's concert tonight! what an amazing gift mason is, he sure is a miracle every day. you guys are such wonderful people, I feel like I have known you forever, eventhough I have never met you....what an inspiration this blog is to me when I come read it. you guys are truely amazing through all that you have ben through.

Victoria said...

You're family is so inspiring! I had some time (Im not in school because of my health) to read a lot of your blog (not trying to sound creepy at all :)) and Im so sorry for what you're going through. Im inspired by your faith and how you are trying to make a difference. Thank you for fighting for your precious boy and others!

I can see God using you to reach others! Im praying for peace for you as a family because I know how stressful it is to deal with an illness 24/7 and have your whole life change from it. Praying for more peaceful days ahead!

"My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever" Psalm 73:26

Victoria Wilguess

madelyn said...

Happy Heart Day! I know the concert will be amazing. Enjoy! I pray everything continues to go well for you all.

Anonymous said...

Summer... that is SO AWESOME that you and Mark got to go to the concert last night. That is my dream is to hear Paul in person. I treated myself by downloading his new CD to my Ipod last night during his concert time so I could be there in a far away kind of way. Valentine's Day took on a whole new meaning for me when I was diagnosed with my CHD at 29 years old 7 years ago. I am so grateful for the 38 months you have had with Mason and I hope for Many, Many more years with him! Thanks for your continued updates on Mason and your family... I love keeping up with how he is doing!

Happy Hearts Day!