OUR STORY

                                                                 ~ PChdWA ~

A place to talk and get advice and give advice about dealing with heart defects and surgeries. ~A Place to call 'home' and come to with ur sadness, loss, joys, acheivements, Love Happiness~ ~ Use our Shoulders for Strength in your time of need & sorrow. ~Use our Love To Raise you Up higher when Great things happen! ~Welcome Home, come in, take ur shoes off, kick back & stay a spell. Amazing what a Great Heart family we are creating! <3 May God Bless Us All <3 Amen!

 

HI Loves! WELCOME!!!
My Name is Kym,
I'm 42. Mom of 3 & {3 bonus lil loves} I Created this group and help Run group with my Awesome Co~Admin, Sarah!! We thought we'd share a little bit about ourselves & Why we are Both So Passionate about CHDs & getting much needed Awareness & Research! My son, Keegan was born April 4, 2002.  He Came out Blue.  After he was born we found out He Has 9 heart defects (TGA, PA, VI, PDA, HRV, RAA, ASD, STV, VSD) & PVL {strokes inutero} So far, He has had the BT Shunt, The Glenn & Fontan surgeries by the time he was 3.  He is now 12 & doing fairly well, Praising God.  Because of Him this Group/Page was Created!! I Never wanted another Family new to this CHD journey to Ever feel alone, like I Did! ~Kym !

I'm Sarah  and I'm 36 years old and live in Michigan.  I lost 3 babies, had my son Daniel, lost 2 more, and had Joshua, my heart warrior. He is now 5 years old and has had 9 surgeries including 3 OHSs. He has TOF, PA, CAVC, MVR, TVR, and IRBBB. He's also had 1 cath, suffered 2 strokes, has CHARGE Syndrome, has severe hearing loss, a T3 hemivertebra, FTT, central apnea, hypopnea, absence seizures, and kidney reflux. We are here to help!
~Sarah ~~ <3 <3

Hi all, I am Cassey. I live in the Blue Ridge Mountains in Virginia with my family; we love it here so much. I am 30 years old, and I attend college to attain my youth ministry bachelor’s degree. I have been with my husband for over 7 years now, and we have two wonderful daughters and our new son, Joshua. Our middle one is Lilly, she is a very spunky 7 year old that will go into battle for her sister if necessary. Our oldest is Lesley, she is a vivacious 9 year old. You may know her from the page “Lesley vs CHD-One tough Cookie”. We had no idea about her CHD until birth when she came out unable to breathe and a blue/gray/purple color. Everything in the pregnancy showed normal, so it was a shock to find out after transferring her to another hospital that she was born with Aortic Stenosis and her Aortic valve was completely shut, which stretched her heart 3X normal size and also made her mitral valve deform. She has had three open-hearts, countless procedures, and has one titanium heart valve in place. Eventually she will need that upgraded, and the other valve replaced giving her a total of two titaniums. I felt so alone, and clueless. I love this group and am honored to be here so that nobody else has to feel that way.
-Cass

I'm Laura 
{updated 8-22-19}
I'm 52 years old and I also live in Michigan.  Both My Son (Timothy) and I are suspected of having an Undiagnosed Syndrome aka S.W.AN. (syndrome without a name).  Timothy had the CHD's part of our SWAN.  He had Atrial Septal Defect (ASD) & Pulmonary Stenosis (PS).  Unfortunately he lost his battle at 8 months old.  It's been one of the hardest experiences that I've ever had to go through in my life.  It's not something I wish upon my worst enemy (loosing a child).  I have been apart of the Rare Disease / Disorders / The Undiagnosed / & CHD community ever since.  I made the decision to be apart of the Special Needs Awareness Journey to help Families like our own ....... to continue their fight .... to help prevent another Child / Adult Warrior loss.  To help, "Celebrate Our Warriors and Remember our Angels."  
Laura C. (SWAN WARRIOR)                      
Proud Mom to SWAN / CHD Angel Timothy (10-11-94 to 6-15-95)  
#lt4xtreme #lt4swanchd #2T4CHD #PChdWA

WE want to raise awareness for CHDs & make sure the pulse-ox is Done On EVERY Newborn before they leave the hospital!!! Imagine how many lives it would save!~~ <3 <3

{This post was written by Mom's Kym K.. Cassey, & Sarah (from PChdWA FB page}