❤️

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Your heart determines the mood, the sway, and rhythm of life.  The heart actually represents life.  Imagine how happy, how excited parents are to hear the fetal heartbeat of their unborn bundle.  The heartbeat that  signifies life.  Have you ever experienced a broken heart?  Many may answer Yes!  But was your heart truly broken or was it a feeling of hurt?  Needless to say, your feelings are often repairable.  I’m Stanza Ahmad Harden, my heart is not a feeling, it is my life.

As a small guy I really don’t communicate my feelings well. My sentences are mostly single words accompanied by sign language, body gestures and my adoring smile.  I’m sharing my testimony through the words of my mama, Kandice Dillon.  I trust her, I’m her 4th heart.  I was born April 14, 2018 at 6:59am, a bouncing baby boy, Stanza Ahmad Harden, Jr.; I answer to “Ahmad”.  I was born perfect, rhythmic heart beat, height, weight, 2 eyes, 1 nose, 2 legs with feet and toes, 2 arms with hands and fingers, strong lungs .. yes, I’m good.  My wellness checks at 2, 4, 6, 9,12 & 18 months were phenomenal.  Pediatric observations, palpitations and auscultation reviews during this period all received a thumbs up.  I’m a big boy, walking, talking my language and charming everyone in my path. 

November 14, 2019, I am 19 months old. Just 1 month after my latest wellness check, I awaken during the wee hours not feeling very well. I am unable to verbally express my feelings.  My daddy saw that I was limp, pale, cold and a blue tint.  The room was cold so mama cuddled me while covering me with a blanket.  My body color returned to its natural state; however, I began dry heaving.  My parents knew something was wrong; we headed to the hospital.  We arrived at Richland Memorial hospital where I was seen pretty quickly.  After touching, probing, and examinations, the doctor’s diagnosis was grim.  My heart was enlarged, the left side actually failing.  The doctor’s recommended we be transported to the Medical University of South Carolina (MUSC), 150 miles away from home.  Mama was hesitant about making the trip, MUSC was the place my great-grandmother took her last breath.  Family members comforted mama and encouraged her to pursue the doctor’s suggestion.  Mama and I traveled to Charleston, SC in an ambulance while other relatives traveled by car.  We made it to Charleston – the Medical University of South Carolina Children’s Hospital.  Upon arrival, the specialty team examined me and confirmed I was in bad shape; my circumstances were not looking good.  I was given fluids, some oxygen and some powerful meds the doctors thought may mend my heart.  After a few days of treatment, my response was excellent!  I was released just in time for Thanksgiving.  

April 14, 2020, I am 2 years old! Happy birthday to me!  On my birthday, I returned to Charleston for a follow up visit.  Although I was feeling well, the doctors informed mama that  my condition was not getting better but worsening.  I didn’t get to go home, I spent the next 2 weeks in the hospital. A Broviac catheter was inserted in my chest wall connect to a large vein that lead to my heart.  This helped meds get to my heart. The doctors monitored me often scratching and shaking their heads.  Mama was with me always absorbing the news, rejoicing in the highs and repelling the lows.  It had to be tough.  I was finally released; we are headed home.  We arrived home for a brief stay, 5 days later mama noticed I was not eating and losing weight.  The long interstate ride to the children’s hospital in Charleston started to become familiar.  This was really taking a toll on mama. Her 4th heart, my heart, was deteriorating; the doctors did not offer any hope.  It was this visit that the doctor’s consented that mending or recovery of my heart was not conceivable.  I needed a heart replacement; a transplant was needed to extend my quality of life.  ♥️ = Life.

May 2020, a few weeks after turning 2 years old, I am placed on a listing for a new heart; I am officially awaiting a transplant.  One thing about this list, it was not sequential.  Your placement on the list did not guarantee you were next.  An organ donor must be a perfect match.  The organ I needed was not an extra organ anyone would have to donate.  You see, everyone is born with 1 heart, no one has one to share.  In order for me to have life, it requires a loss of life.  Think about it! In order for Stanza Ahmad to live, someone must die. Whew! That’s a profound thought, even for a 2year old. ♥️ = Life.  Apparently my behavior coincided with symptoms of heart disease, I loss my appetite.  I received a feeding tube to help get nutrients in my yet growing body.  Shortly afterwards, we were sent home to wait.  I’m a rambunctious little dude, no strings attached; 2 weeks after going home I removed the Broviac line.  Mama took me to the local hospital in my hometown.  The doctors regrettably informed mama they were unable to repair my damage.  On the road again! Back to Charleston.  Mama and I expected a reinsertion of the tubing and to be sent on our merry way.  Not so, my heart was seriously failing.  My heart was not sufficiently pumping blood throughout my body to keep my brain, lungs and other organs healthy.  I am awaiting a donor, doctors sought immediate relief until a comparable donor is found.  Someone must give their life in order for me to live. ❤️ = Life.  

June 16, 2020, a Berlin heart became my lifeline.  The Berlin heart consisted of a plastic pump that had tubing for blood and a separate tubing for air.  The blood filled tubing was connected to my heart and main artery while the air filled tubing was connected to another unit, the driving unit.  This air pump was my drumbeat, my heart, my life.  After the 8 hour procedure, I was resting in Pediatric Cardio ICU connected to wires, a ventilator for breathing and lots of medicine. The days that followed were Berlin, mama and me.  Berlin was my bridge to transplantation — every day we waited.  Every day mama wondered how did we get here?  What caused this to occur?  I appeared to be healthy at birth; my wellness visits were okay.  The doctors said my condition had traces of a common cold. Strangely, mama couldn’t recall symptoms of a cold.  We are on a journey — without directions, without a time of arrival, without projections of danger ahead.  For now, we forge forward. ♥️ = Life.  I don’t hear mama talk about it but I know she must miss being in our own home, playing and caring for my 3 older siblings, sleeping in her own bed. Mama would get a break occasionally, other family members would relieve her. We wait…..and wait…..and wait.... ♥️ = Life.

Great News!  There is a donor!  I have a heart!  No specifics about the donor, I have a heart!  ❤️ = Life.  At this point, nothing else matters.  Things started happening so fast — family consultation, pediatric cardiologist, nurses, surgeon, coordinator, anesthesiologist, and prep team. September 23, 2020, I received a new heart.  Berlin was removed, my deteriorated heart removed, new healthy heart in place.  I don’t remember anything, I heard I was a trooper.  The entire procedure was 18 hours.  I am so thankful for the anonymous donor, pediatric cardiology team, my family and loved ones.  I have a long road ahead.  My new heart and I are getting to know each other.  Two weeks after the transplant, mama and I were released to our temporary home; I can’t be too far away from the hospital.  I am delicate and must be cautious about my environment.  Hopefully I can see my siblings soon.  I thank my mama and daddy for being with me every step of this journey thus far.  We got this!  From the heart of Stanza Ahmad Harden, Jr., My Heart is my Life,  an angel loss their life for me to live.  4ever Gr8ful. 🤗

As Stanza Ahmad’s mother, this journey has not been easy.  I have discovered spiritual and physical strength that I did not think I had.  I have met people along the way that have deposited seeds that I will nurture and grow; seeds of knowledge, strength, courage and security.  As a mother of 4, this journey has most definitely heightened my attention to behaviors and physical changes.  I learned to take nothing for granted and to question everything!  When I reflect, I recall times Ahmad would be a blue tint.  I now know it was an indication of heart disease.  I also learned that every child is different.  

I confess – God is Awesome! He works in His own timing.  ❤️ = Life. 

My heart is Stanza Ahmad. My miracle.