- Posted January 31, 2014 by
los Angeles, California
This iReport is part of an assignment:
Living with a rare disease?
The Child With A Backwards Heart
This is not my story,this is my heart warriors fight.
"6 pounds and 2ounces" is all i heard when my son Bryceon was born on August 27,2006.A sigh of relief waves over a mother hearing their newborns weight.I thought good he's a perfect size and has all his ten fingers and ten toes.If i only knew that wasn't even half the normalcy my son was going to battle with.
My pregnancy was fairly normal.Except towards the last trimester when i started to sleep the day away.Not knowing that it wasn't me that was tired...it was the life i was carrying trying to tell me his heart was overworking.My doctor didn't think anything of it..typical pregnancy fatigue..ultrasounds didn't show any complications.nothing...nothing wrong at all.
Fast forward a couple hours after birth and a nurse came into my room to take my new little life into the nursery for basic vitals and so forth.No big deal.I decided this would be a good time for a bathroom break.What seemed like hours later was only minutes and the nurse was knocking on the bathroom door asking me to step out if i could to sign some paperwork.I step out seeing.my newborn in an icubator with oxygen and two emt's ready to escort him to Los Angeles Childrens Hospital(which was next door) because my son was not breathing and turning blue.All i remember is the nurse sayingits his heart,something is wrong with it" i wanted the floor to swallow me up and let me take my new baby with me.The absolute shock made the rest of that night a blur.Two days later.My husband is signing consent forms for our son's first open heart surgery.He was diagnosed with Dextro Cardia Situs Inversus,DORV,and Asplenia Syndrome.The breakdown Bryceon not only had a heart on the right side of his body but it was backwards and flipped..so the front was actually the back.He also was missing his left ventricle and had 2 weak right ventricles,which causes no proper circulation of blood to pump throughout the body.Asplenia Syndrome is having a non functioning spleen that does not do anything to help him fight off even the smallest cold.
Bryceon has undergone 3open heart surgeries,chest tube placements2 diaphragm surgeries,and countless other invasive procedures to function at a normal rate.He is even rare in the congenital heart defect community only making up 3% of people with heart defects.
He is now 7 and deals with some foid issues as well as motor and behavioral because of side effects of long term medication at such a small age.But he definitely makes up for it in enthusiasm and creativity with his personality alone.Looking at him one would never even guess his heart is pumping ten times fastet than the normal heart to stay alive.He is my heart warrior..battle wounds and all and i wouldn't have it any other way!