Every year, 100,000 babies don't make it to their first birthday because of CHD.
A baby, a grandfather, a 7 year span, and one incredible Heart Surgeon

Congenital Heart Disease (CHD) affects approximately one in 100 babies born. In most cases, there is no known cause. Possible reasons for CHD that have been researched are chromosome abnormalities and environmental reasons. There is also the notion of genetics. 

This is a story of our family. A baby. A grandfather. One Surgeon. A span of 7 years. And a burning desire to spread awareness and raise funds for a condition that has made its presence loud and very relevant in our lives: Heart Disease.

On November 27th, 2013 Remington Daniel Maloof, (Remy) was born into the world. By all accounts, Remy was to be a healthy and big baby boy. However, within moments of his birth it became immediately clear that there was something terribly wrong. With oxygen levels at 40%, skin color radiating a bright blue, and a hospital without a NICU, Remy was frantically and immediately transported to a neighboring hospital that was equipped with a Neonatal Intensive Care Unit (NICU). There, the doctors were able to diagnose that Remington had been born with a Congenital Heart Disease called Transposition of the Great Arteries (TGA). The decision was made to Air Flight him to Children’s Hospital of Los Angeles (CHLA) where, at only a few hours old, Remington would receive his first life-saving procedure, a balloon catheterization. This procedure, a success, made way for the necessary open-heart surgery Remington would have to undergo at 5 days old.

The agonizing decision for Remington’s parents, Danielle and Jonathan Maloof, to hand their baby over to a surgeon to repair their son’s tiny heart was met with the kind of angst and trepidation no new parent should ever have to experience. The only constellation to this situation being that the surgeon, they were told, was amongst the best this country had to offer: Dr. Vaughn Starnes.

Who is Doctor Vaughn Starnes? His resume is astounding. He is co-founder of the Heart Institute and Chief of Surgeon at Children’s Hospital of Los Angeles as well as Chair and Surgeon-in-Chief at Keck Hospital of USC. Just a few of his most notable accomplishments are: performing the world’s first lobar transplant using a lung segment from a living donor, performing the first live-donor, double-lobar lung transplant on a patient with cystic fibrosis (an operation involving taking lung tissue from each parent and transplanting into their child), and performing Southern California’s first robotic heart operation. Clearly, there was no doubt Remington was being placed in the best of hands although that did not stop the entire Remington Maloof army of 25 people on the day of surgery observing Dr. Starnes in the cafeteria.  They noticed the type of coffee he was drinking, the way he sipped from his cup, used his utensils for his breakfast, his demeanor and mannerisms as he met with his team, and, most importantly, was he yawning, or did he seem well rested to take on the challenge of saving our Remy? Our hope was in Jesus and our prayer was he would use Dr. Starnes’ gift to repair Remington’s heart.

 Our prayers were answered. Remington’s heart was repaired by Dr. Starnes and his team and while the journey for Remington has not stopped there the surgery was, by all accounts, a success.

This encounter with Congenital Heart Disease ignited a fire in our family. A desire to learn more as well as a desire to HELP the CHD Community pressed on our hearts and consumed our minds. A non-profit organization was born in 2015 that we call Save the Heartbeat (STHB), with a mission to fight to improve the lives of those affected by Congenital Heart Disease, one heartbeat at a time. To date, STHB has raised hundreds of thousands of dollars towards its’ cause and continues to work very closely with CHLA as well as other pediatric hospitals. Since Remington’s surgery, we have had encounters with Dr. Starnes from time to time and though we have enjoyed those encounters, our hope has been to never have to see him again in a surgical environment.  While that hope has so far been fulfilled for our Remy, imagine our shock when our father, Remington’s Grandfather, an extremely active man who is a picture of health, Dan Parke, was faced with his own heart battle.

In recent years, Dan has had his heart monitored for A-Fib.  Measures have been taken to control this condition: medication, a procedure called an Ablation, countless visits to the doctor’s office and even the ER because something just was “not right”, etc. Finally, in late 2020 Dan had an encounter as he exited the golf course that landed him back in the ER. The once again diagnosis of “Well, this is just your life with A-Fib now” was no longer acceptable.

Recalling that our favorite heart surgeon was world renowned for performing surgeries on both babies at CHLA as well as adults at Keck, we made a call and an appointment scheduled. After a thorough exam and meeting with Dr. Starnes it was determined that this doctor, who saved Remington’s life, would now be tasked to save our Dad’s; an open-heart surgery to repair two leaky valves, a primary and far more dangerous diagnosis to A-Fib, was imminent. While Heart Disease has become a way of life in our family, the trepidation and angst leading up to this moment was no less. Add on to this that the surgery would take place in the midst of a pandemic and our army of 25 that was there for Remington could not physically be present for our dad . . . our hope was again in Jesus and Dr. Starnes’ gift of repairing a broken heart.

We are beyond blessed and relieved to report that while the recovery for a man our dad’s age has not been easy, his surgery for the issue at hand was a success. Dr. Starnes saved our dad’s life, just as he did Remington’s.

We are left today with so much gratitude for a man, a surgeon, that God used to save two members of our family. We are also more committed than ever to use our voices to educate and raise awareness about Heart Disease. February is Heart Disease month. We want to use our experience and our story to remind you that Congenital Heart Disease is the most common birth defect, affecting 1 in 100 babies. Be your babies biggest advocate before he/she is ever born. Persist in getting the heart thoroughly examined in utero because at the very least, you can have a medically tailored planned ready when your baby is born.  And, as you continue on in life, persist in finding answers when your body is telling you something is not right. We invite you to join us in our quest to improve lives effected by Heart DIsease. Visit us at: www.savetheheart.org for more information.

 

 

 

February 26, 2021 by Danielle Maloof

Comments

Antoinette McKellar

Antoinette McKellar said:

My daughter was born in 1996, almost seven weeks premature. The hospital also had no NICU, so she was transported to CHLA.
She was diagnosed with four CHD’s- ( ASD, VSD, PDA, and a Coarctation)

Dr. Starnes performed open heart surgery on her when she was less than 10 weeks old.
It was only just before the surgery that we found out what a magnificent and truly talented surgeon Dr. Starnes was, and all of his accomplishments.

My MIL had happened to stepped out of the waiting area, only to see what she thought was a medical resident carrying her grandchild to recovery from surgery.
Later, when questioned, Dr. Starnes replied,” I carry all of my babies from surgery into recovery.”- something that could have easily been done by an RN or other medical staff- that just goes to show you the the dedication this man has to his craft.

My daughter just celebrated her 25th birthday this month.

So wonderful to hear how well your father and son are doing, thanks to this gifted surgeon, and the wonderful staff at CHLA.

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